Big Trip: Off to the Lyme Docs

By the time you get this blog entry we'll probably be on the road to the Lyme doctors.

Both of my parents are taking me, and Abbie is taking care of Asher Dasher/Fuzz Face. I always look forward to my divorced parents being on a car trip together--NOT! I bought some good ear buds for my iPod to block out all the shop talk and disagreements over navigation! No, really, they do pretty well, but it can be entertaining. I'm VERY lucky that they unite for me. And Abbie is great to take care of Asher and to feel comfortable with Mom and Dad travelling together. They both like to be present at the doctor's appointments. Also, my mom doesn't enjoy any city driving whereas my dad doesn't mind at all. My mom is great at covering all of the maps and navigation as well as ALL of my food and medical needs. They each have their 'duties'! haha.

I will be seeing two doctors on this trip:

1. Dr. Lyme, whom I first saw in 2005 and has been monitoring my care since then via phone consults. This will be our first trip to see him since my original visit.

2. Dr. Y, an alternative doctor who deals with a lot of Lyme patients. The woman who first helped me to find Dr. Lyme is now working with Dr. Y and having REMARKABLE results, so I am going to see him also.

The two doctors are only one town apart, so we are going to be able to see both easily in one trip.

I'm not really looking forward to the travel, taking the whole house with us, and not having my Tempur-Pedic bed (and Asher to cuddle with), but I figure if I could do the trip in 2005 when I was MUCH sicker, I can do it now.

We've rented a Subaru Tribeca (keep your fingers crossed, as they don't guarantee anything when you rent a car). If we don't get that, we'll take Abbie's Forrester. We're hoping the Tribeca will give me lots of space to recline and put my feet up for the long drive (about 6-7 hours).

Usually, before I would venture out to see a more alternative doctor (or any new doctor for that matter), I would be obsessively researching ahead of time. For some reason this time around, I'm not. I feel completely at peace. I trust my friend Jenn and her instincts. She found me a good doctor in Dr. Lyme. She's been through the wringer in the traditional and alternative medical world in her 15 years of being sick with Lyme disease. She's incredibly motivated to get well and find the best treatment available. She never stops searching for answers or fighting for better health. I am going to go into my appoinment with Dr. Y with an open mind and trust my gut.

Most exciting about the trip is that I will be meeting Jenn! She has been one of my most cherished mentors and friends that I met through DINET and has helped me to find my way on the Lyme journey. She is the person who originally sent me an email that said, "Emily, I don't want to push anything on you, but your story reminds me so much of mine. You are like a poster child for Lyme disease." She left the door open for me to decide whether or not I would like to pursue Lyme more. Her email came at the same time Dr. ANS had also suggested Lyme as a possibility in the summer of 2005. Since then, we have become friends and she has been a great mentor to me.

She is going to meet us at the hotel before my appointment with Dr. Y and have breakfast with me, and then head over to his office with us. She is also going to stay with me through the appointment so that, if I do decide to follow this doctor's treatment plan, she can be my mentor. Our visit time will be short (and I'm sure I'll be running on adrenaline and not quite awake in the morning, as I never am awake in the morning!) but just to meet her in person and give her a hug will be great! We know we will see each other again!

It should be a beautiful fall drive (if I'm awake for any of it). The Lyrica has been helping my pain a great deal and I'm hoping it will help with the trip. Car travel is really difficult for me, but we must make this trip. I know I can do it. I'll just need some serious recup time when I get home! I'm loaded up with extra Klonopin, Zofran, candied Ginger, a bazillion pillows, my prayer shawl, my iPod, and every other possible comfort item I can think of. We really DO need that Tribeca to fit everything in.

The year 5768 is here. A new birthday year is on the horizon. I feel full of peace, joy, hope and healing. I'm not sure where all of this is coming from, but I feel good about the Jewish New Year and about turning 32. I'm in a much better place than I was when I turned 30 or even 31.

I feel that my spirit has finally blossomed into the butterfly it's been longing to be. My body is still a turtle, but it's a turtle that's gaining on that hare. In the past couple of months I have felt an indescribable transformation taking place within me.

I'll report on the big trip when I am able!

Blessings,

Emily

Photo: Zinnia in our neighbor's yard. They have a huge patch of gorgeous wildflowers that have been blooming all summer long, and are still going strong.

Last Week's Menu: Fried Computers and a Side of Crashed (and mashed) Hard Drives

Funny how God works. He has quite the sense of humor

Right after I declared email bankruptcy, my computer crashed--external hard drive and all. Thankfully, everything was rescued off of my external hard drive which contained all of my music and pictures. In the grand scheme of life, I realize it's just a computer and I have all of the CDs to reload--but still it was NOT a fun moment! And so much for keeping up with email as it arrives in my inbox!

I honestly thought that I had covered my bases with the external hard drive--little did I know that something as simple as the darn thing accidently getting unplugged from the computer could cause it to crash! I mean, come on! Grrrrr....Reason number 1058 I'm not a computer person. My computer is almost four years old, so I got the external hard drive figuring that would be 'enough' back up for what didn't fit on my computer anymore. I also keep all of the memory cards from my camera 'just in case' (yes, I'm a bit obsessive, or so I thought--but I STILL came close to loosing all of my 'stuff')

When my mom sent out a mass email to my Iowa family cancelling this month's newsletter since I had no computer, my cousin Mary wrote the best response: "When I got your email I was worried that it was Emily who had crashed. I am glad that it is just her computer that crashed!" (I'm not getting the wording exactly right, but it made a good point about what matters most.)

Our friend, Bruno, rescued me. Best Buy and the GeeK Squad were able to rescue the data on my external hard drive. Bruno rebuilt my entire computer so that it now has 160 GB of memory instead of a measly 40 GB! So, now my information is in TWO places--if my computer or external hard drive crash again one of them will hopefully still safely contain all of my data. Oh, and he put all of my music onto DVDs 'just in case'....so now my bases really SHOULD be covered!

So, now, I have a pretty spiffy computer--and it's working so much better than before.

Thank you Bruno!

I have NO idea how many hours he spent on repairing this computer--but the first night he was up until 4 am working on it. I don't know how we will repay him.

And secondly, I have decided someone needs to invent a computer that normal human beings can work! (Caroline? Are you game?) Bruno says most people waste at least 20% of their time dealing with computer problems rather than being able to do the work they want to get done. Why can't someone (I think a woman needs to do this!) come up with a computer that is intuitive and easy to use?

I have to admit that I enjoyed the unplanned 'computer vacation.' Most folks go on vacation and leave cell phones and computers behind every once in a while. I enjoyed having the forced vacation. It gave me time for things other than being tied to the computer and I felt a bit of a relief from tackling that inbox for a few days.

At first after my computer crashed I thought perhaps the best solution might just be to throw the whole darned thing out the window. Bruno (Mr. Computer), was aghast at how pathetic my computer was and how slow it was--you know 10 minutes to start or shut down.

Now that it's working about 100x better, I'm happy to have it back. I realized, that as much as I want to throw it out the window some days, it is my medium to do what I love: Write.

Still I got a good (and much needed) lesson in balance and the need to take mini-vacations from the computer.

So, I'm back to blogging and overloading your inbox with updates! Haha.

Back in the saddle again,

Emily






Photo: Bruno! (I made him send me a picture of himself and he just had to try and take one with his iPhone that he thinks is soooo cool!)

Rosh Hashanah and Email Bankruptcy? Yes!

I just sent this email out to my family and friends (so most of you probably received it via email). It may be one of the bravest things I've ever done, or one of the craziest! I'm not sure which yet! (Not as crazy as throwing my computer out the window, though, which some days I think I just might do!)

Dear Family and Friends,

As Rosh Hashanah (the Jewish New Year) unfolds and Yom Kippur (the Day of Atonement) approaches, I find myself reflecting on this past year and the year to come.

What was great about this past year? What wasn't? What is weighing me down? What do I want to do better in the new year? Most importantly, as Jews, we ask ourselves whom we have sinned and to whom we must apologize and ask forgiveness. Then we ask what we must take to God and ask Him for forgiveness. It is very important not just to ask God for forgiveness, but to apologize to those on earth we have sinned and ask for their forgiveness.

For me, I am often weighed down by guilt--guilt about many, many things but in this particular case it's 'email guilt' I'm discussing.

How can I shed myself of this guilt?

I have decided to declare what is now called 'Email Bankruptcy'. It's taken me several months to get up the courage to do this and I'm still not sure where it will lead. But, I thought that as I approached a new year in Judaism and a new year in my world of birthdays, this was the time to make a change.

When I first opened my new Gmail account in January of 2006, I swore that I would stay on top of archiving messages and replying to people. I would learn to write briefer replies to let people know that their messages had been received, savored and enjoyed even if I couldn't write as long of a response as I would like. I would keep my inbox at 25 messages max.

Now, it is September 2007 and I have over 400 messages in my inbox. I am often so paralyzed by this backlog of messages that I just can't even start an email to ANYONE. Or I respond to the email that's new and the rest fall off of my radar screen. It's horrible to admit this. I'm embarrassed. I'm ashamed. I feel like a bad friend. I know how much time and energy goes into emails. Why shouldn't I hold up my end of the bargain?

I've spent my life searching for mutuality in relationships, and now that I've half figured out how to do that, I'd like to keep it!

So, why this big leap? What is Email Bankruptcy anyways? It's different things to different people, according to the article that Mom clipped from our local newspaper that first spawned my idea to do this. I'm drowning in papers, emails and stuff that I just can't keep up with given my physical limitations and I'm fooling myself thinking that 'someday' I'll catch up! Life is too short to spend feeling this bogged down and guilty!

Email Bankruptcy means that I'm saying that I'm going to focus on the emails coming in NOW. I'm not going to even TRY to continue to operate under the delusion that 'someday' I will get to ALL of your messages, answer all of your questions, etc. It means taking a HUGE leap of faith that my emails may be less frequent, but that my love for you is NOT less. It means taking a leap of faith that you'll still stick by me. It means that I STILL want to get your emails with pictures and I still want to hear your news...I'm not trying to cut myself off from people. Just the opposite.

What I am going to do over the next few months is read ALL of the messages in my inbox and savor them. Then, I will archive them. Sometimes I left them sitting in my inbox because they were so meaningful, and maybe I received them on a day I wasn't feeling very well, and I wanted to make sure I re-read them. Sometimes I leave messages in my box because I want to give them my full attention, 'wait' until a 'better day' to write, and then that day doesn't come.

I feel like I'm cheating people by not writing back, by archiving some really wonderful messages that truly deserve a response. I feel like I've made so many promises I can't keep--"I'll write more soon," I promise to people, when in reality my body is not going to allow for that. It is going to be VERY difficult for me to just archive a message that has touched me so. Perhaps, I will write 'Thank you,' and you will understand WHY I'm sending you those two words--because that email was extra special.

What I'm asking for from you, as my friends and family, is acceptance and love and forgiveness. What I'm asking of myself is to move on in the new year and to be a better friend.

My ultimate hope is that declaring Email Bankruptcy will benefit ALL of us. I hope that it will mean that I can give the messages coming in now better attention, that it will keep me from being so paralyzed by my inbox, that it will give me time to be a better friend NOW.

From a personal standpoint, I also want to be able to spend more of my computer time blogging and more of the rest of my time away from the computer. I don't want to spend all of my 'awake time' on emai, which is what I started doing and it became a 'job'. As we all know, email can be a the best thing in the world and the worst! I love that it keeps me connected with friends all over the country (and the world) but I hate that I can't keep up with it! As many of you know, spending time on the computer is hard on my neck and my Autonomic Nervous System--and it can often make me sick. So, in this sense, less time on email is physical preservation. But, it's also for the purpose of emotional preservation and healing.

As I've started to feel a bit better, it has meant that sometimes I want to spend time face to face with someone rather than emailing. So, I'll have a friend here for a visit but that means falling behind on email. Still, having Carrie or Marla or Sarah or Loralea or Erika or Mommy Bev or Uncle Stan or Alexandra or Jessica or Angela or Tess or Ted or Kate or any of my wonderful visitors this summer HERE is what I love so much. So then it means a little less email time (or a lot less, as the case may be). Sometimes, too, I want to spend time with Asher, or knitting, or with my mom and dad and Abbie without constantly thinking about who I 'should' be emailing. (Yes, I literally do this--I have THIS much guilt).

Today, I called my "Mommy Bev" and we talked about the whole concept of email bankruptcy, and I realized I've just been putting it off and putting it off....and I realized that ALL of us sometimes get a bit bogged down by email. This might mean that Bev and I email a lot less frequently in order to have that hour on the phone every once in a while. It's a trade off.

So, what this all means in a nutshell pretty please?

In the form of brevity:

1. Most importantly it means that I think that I will feel a huge weight lifted and that I will, in the end, be able to be a better friend to myself and to you.

2. It means that IF YOU SENT ME AN EMAIL in the past few months that WAS DEAR TO YOUR HEART and you are LONGING for a reply to it, please, please, tell me and I will make an extra effort to reply to that specific email. I have all of my emails in Gmail and can easily do a 'search' for a topic or keyword or date.

3. It means that I might write back with more immediacy, but with more brevity (i.e. I might say "Thank you so much for your email update" so that you know that I received and appreciated your email even if I don't answer all of your questions,

4. It means you have the right to say, "Hey Em, I emailed you such and such a while back and I would really like it if you would answer at least this question..."

5. It means that my emails might be less frequent.

6. It means that I LOVE YOU just as much as I did before! :) It means having faith in loving through being and not always in loving through doing.

7. It means that just because I choose not to spend as much time on email, I understand that for many of you email is the easiest way for you to be in touch.

8. It means that I still want to hear from you.

9. It means that I must do this for my own physical and emotional well-being and I pray that you will understand.

10. It means that my blog is the best way for you to stay in the loop with what is going on with me, so that when I do email you I can focus on YOU.

11. It means understanding that your emails and your love have SUSTAINED ME and no email has EVER gone unappreciated, even when it has gone unanswered. I'm thinking of emails from my Cousin Stephen or Cousin Kristen or Cousin Kathy or Cousin Mary or Britt or Aunt Jeanette or Aunt Joan and soooo many others who write and write despite my poor responses!

It's going to be a learning process. And I understand COMPLETELY that for many of you email is the best way to keep in touch. And it is! I just need to let go of the past emails and focus on the present emails! And you all know that I LOVE your pictures! :)

Wish me luck on this new journey that I haven't quite figured out yet. And, of course, if you are on top of your inbox at all times AND don't spend all day on email, let me know your secrets!

Thank you in advance for receiving this 'declaration' with love and forgiveness...

L'Shanah Tovah, Blessings, and Love,

Emily

P.S. Just ran a spell check and Gmail didn't recognize the spelling of any of the Jewish words! Ha! They need to become more ecumenical! LOL.

Photo: For some reason I just love the foliage on these wildflowers in our neighbors yard. I find this picture restful and peaceful--which is how I hope I will feel after I figure this whole Email Bankruptcy thing out! At peace.

REPORTED! Dr. Pain and the Painettes

Last week I received an email from my cousin Dana with the following question and statement:

"When are you officially reporting Dr. Pain? Do it before Yom Kippur so you can cleanse yourself of him in the new year."

Brilliant, I thought! What a great idea. So, this past weekend I got everything organized and emailed the woman at our hospital who is in charge of dealing with patient satisfaction issues.

I feel horrible admitting it, but it actually felt good to report Dr. Pain and his Painettes (a phrase I cannot take credit for, but I think it is so clever! Thanks Lois!).

In reality, the story of Dr. Pain and his Painettes speaks for so many people who have experienced such treatment from the medical profession.

I appreciate all of the amazing validation and encouragement you all provided me along the way.

And I feel good knowing that I did the right thing in standing up for myself, and ultimately for all of us desiring better health care.

Below is the email response I received from Kathy at the hospital and the email I sent her regarding my experiences with Dr. Pain and his Painettes. I did speak with her via phone before emailing her more detailed information. Details have been erased/edited for privacy purposes. I emailed Kathy on Saturday and heard back from her promptly on Monday morning.

I'll be interested to see how this all plays out!

Blessings,

Emily

Hello Emily,

Thank you for emailing me so that I can investigate. I put your original message aside in my 'pending' pile and now I will begin a active file. I have read your email, but not your Blog. I will read it later today after my meetings and then, I will decide on my next step. I do respect your need for confidentiality during this investigation and clearly understand your reasoning for requesting it. Please give me a month to get back to you about your complaint, so that there is sufficient time to investigate and have some follow up action.

Thank you for bring your concerns to my attention, so that we can make any needed improvements to our care and service. And I really appreciate your kinds words about the individuals that you mentioned below.

Take care of yourself, while I am taking care of your concerns, Emily!

Kathy

Kathy:

I apologize for how long it has taken me to get the following information to you. I wanted to write about my last encounter with Dr. Pain and his staff before I emailed everything to you. Due to the nature of my illness I have very limited energy and stamina, so it takes me a very long time to get things done. My apologies.

I know that we discussed issues such as "poor communication" and "attitude", however I feel it is very important for you to read my blog entries about what exactly happened during my interactions with both Dr. Pain and his office staff. What happened cannot be put in a little box of "attitude" or "communication".

I have been ill for over 9 years now and have seen my share of doctors. I have a very difficult and complicated case, which I understand. Many doctors locally have been humble enough to tell me that I am and probably will be the only such patient they see in their lifetimes. Rather than attack a patient because a doctor does not understand her illness, I would like to see a change in attitude among ALL physicians at [the hospital] towards patients with difficult cases. I have a specialist who's pager is always available to doctors who might need to contact him. I have had mixed experiences so far at [the hospital].

I DO want to commend the following people who are either employed by [the hospital] or have hospital privileges there for their exceptional care:


[names all deleted for privacy purposes]



All of these folks have gone above and beyond for me both during my gallbladder surgery in 2005 and my many visits that followed to both the ER and the MTU. They were great about calling my specialist, paging Dr. Gallbladder, dealing with my difficult veins, and making sure I received WARM fluids. Sorry that I do not know specific names or last names of each of these folks. I was pretty out of it on many of my visits to the hospital! Please let me know if you would like anymore details on what makes each of these people so exceptional. And please feel free to use my name in telling them that they have been commended for their outstanding and compassionate care.



I do not know if the following two nurses still work on the Med-Surge floor--but Becky and Debbie both had very unacceptable behavior during my time spent there. For example, I told Becky that I needed to be cathed (as I still was unable to urinate on my own) and she told me it was not possible that I needed one. I was in excruciating discomfort and waited over 2 hours for someone to cath me, at which time I had more than 1000 ccs in my bladder.



I understand that my blogs are long, and I also ask that you take into account the audience for which they were written (my friends and family). I do want to note the outpouring of support I have received. I have repeatedly been validated that this sort of behavior is unacceptable, that doctors DO call people back, that his treatment is outrageous, etc.



Here are links to my blog entries on my experiences with Dr. Pain. He is called 'Dr. Pain' for privacy purposes, as I do not use names or addresses on my blog.


Link to description of first appointment with Dr. Pain as well as my call to him when he was 'on call':

http://adancinglight.blogspot.com/2007/08/part-ii-crash-boom-boom.html

Link to description of continued dialogues with Dr. Pain's office staff:

http://adancinglight.blogspot.com/2007/08/making-patients-wait.html

The waiting game continues (as does the frustration):

http://adancinglight.blogspot.com/2007/08/dr-pain.html

My most recent and most demeaning encounter with Dr. Pain's office to date:

http://adancinglight.blogspot.com/2007/09/dr-pain-super-duper-pain-in-toosh-and.html


I am very concerned that if Dr. Pain's office knows who reported him, his office staff will continue to 'punish' me at future visits, so I ask that my complaint be kept anonymous and that details which might 'give away' my identity be used carefully.

I would also appreiciate a follow-up call, email or letter letting me know what has been done to deal with the poor treatment occurring at the Pain Management Clinic.

Thank you in advance for your time and consideration of this matter,



Emily

Weekend Lyrics: My City of Ruin and Imagine

Weekend Lyrics were chosen to honor the anniversary of September 11, 2001...

My City of Ruin
by Bruce Springsteen


There's a blood red circle
On the cold dark ground
And the rain is falling down
The church doors blown open
I can hear the organ's song
But the congregation's gone

My city of ruins
My city of ruins

Now the sweet veils of mercy
Drift through the evening trees
Young men on the corner
Like scattered leaves
The boarded up windows
The hustlers and thieves
While my brother's down on his knees

My city of ruins
My city of ruins

Come on rise up!
Come on rise up!

Now there's tears on the pillow
Darling where we slept
And you took my heart when you left
Without your sweet kiss
My soul is lost, my friend
Now tell me how do I begin again?

My city's in ruins
My city's in ruins

Now with these hands
I pray lord
With these hands
For the strength lord
With these hands
For the faith lord
With these hands
I pray lord
With these hands
For the strength lord
With these hands
For the faith lord
With these hands

Come on rise up!
Come on rise up!
Rise up


Imagine
by John Lennon, 1971


Imagine there's no Heaven
It's easy if you try
No Hell below us
Above us only sky.

Imagine all the people
Living for today ...

Imagine there's no countries
It isn't hard to do
Nothing to kill or die for
And no religion too

Imagine all the people
Living life in peace ...

You, you may say I am a dreamer
But I'm not the only one
I hope someday you'll join us
And the world will be as one.

Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people
Sharing all the world ...

You, you may say I am a dreamer
But I'm not the only one
I hope someday you'll join us
And the world will be as one.



Why I chose these Lyrics: I spent part of Saturday talking to both my mom and Jeannine asking, "What do you remember about September 11Th? What comes to mind for you? Is there a song that makes you think of that day?"



This is perhaps, the first year I've truly spent hours reflecting on September 11Th. In past years, I'll admit that my personal medical crises overshadowed time for introspection on this topic. This weekend, I listened to the 2 disc CD set America: A Tribute to Heroes. I talked to my mom and Jeannine.



Last night, I chose two songs from the CD set--as I could not pick just one. Melissa might say, "Can I pick two? Pretty please?"



Why did I have such hard time choosing lyrics to remember September 11Th? Because for me, September 11Th has become inseparable from the senseless war in which we are now involved. The lives lost--both Americans and Iraqis. The ridiculous amount of money spent. The lies we were fed as a nation. A president who refuses to admit he is wrong. More lives lost than we ever lost to begin with when those planes hit the World Trade Center. A nation now despised by many around the world. I'm disenchanted with America. I'm embarrassed by what we've become.



This made my gut want to choose an anti-war song. But then, I paused. I forced myself to remember what September 11, 2001 really meant, not what September 11, 2007 means.



When I asked my mom, "What do you remember?" she responded with descriptions of where she was, what she was doing, the shock of it all. She did not immediately jump to the war we are in now. She focused on the event itself. This helped to bring me back to focus. I asked my mom, "Are you more disenchanted with America now than you were then?" "No," she said, "not more than at any other time in my life." She reminded me that there are only a couple of places in this world (the Scandinavian countries) that she might even want to live other than America.



In reality, I know she is right.



When I later spoke to Jeannine, she too had the same gut reaction that I did. How are we what we are now? How did this become America? She, too, could not separate September 11, 2001 from the war and our country's place in the world.



Last night, I chose my Weekend Lyrics and jotted down a few thoughts for my blog today. When I sat down to lunch, Mom noted that Leonard Pitts Jr. had a column in the paper today titled "Does Anyone Remember Six Years Ago?" Oh, how God works, I thought. Should I read the editorial before or after I blogged? His opinions were similar to mine, she said. But he can write it all better than I can, I thought!



Still, I read it. And it was exactly what my thoughts were. But here it is in my own words.



My City of Ruins: I chose this song because for me, it does sum up who we were then, who we were as a country, who we were as a world in those moments and those days after the initial attacks.



I realized how inappropriate it would be to choose an anti-war song for September 11, 2001: to politicize what happened that day. We vowed that the deaths of those in the attacks would not be in vain. And those who lost loved ones are still mourning. We had heroes. We had people rushing to help with the rescue efforts (many of whom are very sick now from respiratory problems). We had, not just a country, but a world, united. We rose to the occasion. And, in those days after the attacks, I was proud to be an American.



When Jeannine and I watched the benefit concert on television, Springsteen had composed this song just for the occasion. I chose this song because I remember that in 2001 we did rise up. We did use our hands to pray, to heal, to help. I remember how clearly this song spoke to me in capturing the raw emotion I felt, the grief we felt as a nation, and the hope that we would 'Rise up."



Imagine: When I asked Jeannine what song came to mind for her, she chose both Angel by Sarah McLaughlin and Imagine by John Lennon. Imagine, she said reminded her of what we could have been: a benevolent nation, not a tyrant. Written in 1971, 30 years before the September 11 attacks, Imagine's words remained perfectly poignant for the occasion. John Lennon's version is also on the CD set that I have of the televised concert.



Initially, we reacted (and so did the world) with love, not hatred. We reacted by uniting. Imagine where we would be today if we had continued to react in that way.



"This anniversary," Leonard Pitts Jr. writes, "then, laments not simply loss of life, but of opportunity." That is how I feel. But he does, as I have done this weekend, remind us that "it is worth pausing to remember that just six years ago we were attacked." I was thankful to awake to his editorial today--a validation of all that I have been pondering these past few days, the mixed emotions, the need to separate the two events, and the difficulty of doing so.



Where were you on September 11, 2001? What do you remember? What song comes to mind for you? What do you feel six years later?



I'd love to hear your thoughts! Leave a comment! Or, if you are a subscriber and you prefer to hit the "Reply" button, just let me know if it is okay for me to post your response under the comment section.



Six years ago, on Tuesday September 11Th (this year the anniversary falls on a Tuesday for the first time), I was living in an apartment with Jeannine. I woke up, got up to pee and heard the TV on downstairs. "Jeannine?" I called. "What's wrong? Are you sick? Are you home from work?" "Two planes just crashed into the World Trade Center," she answered.



Still half asleep, I didn't grasp the magnitude of what she had just said. I went back to bed and tried to sleep. When I got up, I heard the whole story. Jeannine stayed glued to the TV the entire day. I, on the other hand, am one of those people who cannot take seeing the same images over and over again. I cannot take the grief. I have to take 'time outs'. Not because I don't care, but because I literally crumble emotionally and physically.



What I remember so clearly about that day is leaving the apartment to take a walk. I could still, at that time, take a 30 minute walk. I took Winnie for a walk in the middle of the afternoon. I reveled in the quiet from the noise of the TV. I looked up at the clear blue cloudless sky. The neighborhood was eerily quiet and peaceful. All I could think was that here I was taking a peaceful walk on a gorgeous fall day while lives were falling apart and New York City and Washington DC were in chaos. NYC was filled with smoke, dust, sirens, noise.



Here, it was quiet. Peaceful. A perfect fall day. I just remember how unreal that all felt.



Let us not forget those who died that day and remember, "May their memory be a blessing,"



Emily



Photo: A perfect summer day here. This photo was not taken with September 11Th in mind, but it reminds me of the walk I took that day and the clear blue sky overhead.

Dr. Pain: A Super Duper Pain in the Toosh (and a side of Spotted Dick Pudding)

Yes, I'm still talking about Dr. Pain. I need to purge the emotions of the last appointment and move on.



Also, as many of you asked or suggested I have reported Dr. Pain. I have never reported a doctor before, but I certainly feel that his behavior and that of the office staff needs to be dealt with. I am using my blogs to send to the Patient Representative at the hospital, so I feel it is important to blog the last appointment I had with him, which I felt was over the top! They all certainly outdid themselves!



A quick catch up first: After speaking with Toni on Monday August 20 she suggested that I call the office again regarding the still unreceived dictation requesting Lyrica.



Tuesday August 21: I wake up to a message on my phone from Nurse Pain #2. "Hi Emily. This is Nurse Pain from Dr. Pain's office returning your call from yesterday and I guess that Dr. Pain needs you to come in for an appointment to dictate what happened to you on the Neurontin so that he can request the Lyrica. I see in your chart that you failed on the Neurontin but I don't see anything about what happened. Please call our office to schedule an appointment."

Note: I had called Dr. Pain on call regarding the Neurontin because I was so sick. And, I had called the office the following week to ask what to do next and he prescribed the Lyrica. I told them what symptoms I had experienced on the Neurontin. At the time he prescribed the Lyrica I was told the dictation to MA would be forthcoming. I was never told that I would need to come into the office for an appointment regarding the dictation. So, I had a prescription for a drug, but no request to my insurer.

Waking up to this message immediately put me in a foul mood for the day, all before I got out of bed!

I called Dr. Pain's office back and said that he was supposed to dictate this over 10 days ago, and that no one had told me that I needed to come in for an appointment. I was very frustrated and insisted that Dr. Pain call me sometime that day and speak with me over the phone so that I could quickly tell him what had happened to me on the Neurontin. Or I could tell the nurse and she could write it in the chart.

Honestly, there was NO reason I needed to come in for an appointment. I was told that Dr. Pain does not speak to patients on the phone and I must come in for an appointment.

I was transferred to the appointment secretary. She offered me an appointment on Thursday of that week at 3:30. I could not make that appointment. I was repeatedly asked by the receptionists and the nurses why I could not make this appointment. Honestly, it is not their business, nor is it appropriate conduct. The truth is that if I went to see Dr. Pain on Thursday, I would not have been able to see my dad for his 65Th birthday, something we had planned long in advance. Given my stamina, I could not go to a doctor's appointment and see my Dad. I did choose family over a doctor's appointment. And I did choose a prior commitment. My dad does only turn 65 once.

When I asked what other appointment times might be available I was told that the next available appointment was after Labor Day! Another two weeks to wait! I asked if they had any 'sick' or 'emergency' appointments blocked out and she said, "No. He's very busy. So you don't want any of these appointments?" I said, "No, I can't wait that long." And she hung up.

So, I had to call back again and request a nurse. Again the nurse says to me that I have to come in for an appointment. I say I do not understand why I cannot speak with Dr. Pain on the phone for five minutes. She says, "Dr. Pain does not talk to patients on the phone. My doctor doesn't talk to patients on the phone either." I said, "All of my doctors speak to me on the phone when necessary." She says, "Well, I don't know who your doctors are. But you will have to come in for an appointment. I'll transfer you to appointments."

I admit that by this point I had completely lost my cool. I did lose my temper. I did yell at the nursing staff out of complete and utter frustration. I was flabbergasted that I was expected to wait at least another two weeks to come in for an appointment. When I told both nurses that I had originally scheduled an appointment for THAT day after my first appointment but had been told to cancel it because I wouldn't need to come in, they did not apologize. No nurse accepts any responsibility in that office. When I say, "I'm frustrated," they say, "Well, I'm frustrated too." Huh? I think it's supposed to be, "I'm sorry you're frustrated."????

For the second time I was transferred to appointments by another Nurse Pain. Again I was offered the same choices. Again, the appointment secretary snapped at me. She told me that he is very busy and is double and triple booked. I said, "Oh, is that why I had to wait three hours for my first appointment with him?" No answer. "So, you don't want any of these appointment times," she says. "No, I do not." Clank, the phone slams.

I call back a THIRD time and get Nurse Pain who is 'in charge' at this clinic. I tell her she is the one who told me to cancel my appointment and now I can't get one. What am I supposed to do? She says, "You're right, I did tell you to cancel that appointment. Can you come in tomorrow?" I say, "I wasn't offered a time tomorrow." She replies sharply, "I'm asking you if you can come in tomorrow? Can you come in tomorrow?" I say, "Yes." This time she calls appointments herself and the next thing I know I'm scheduled for an appointment the following day, Wednesday August 22 at 1 pm. "Suddenly" an appointment time appeared.

Losing my temper was wrong. I admit that. And I did apologize at my appointment for losing my temper. When I apologized the nurse stood completely still, kept her back turned to me (she was using the computer) and said NOTHING.

Still, I can't help but see that the squeaky wheel did get the grease. I did get an appointment after I complained enough. I shouldn't have had to do this to get the appointment. And, by the time I finished the round of calls I caught myself so enraged that I kicked a door just to hear it slam. My mom looked at me in complete shock. I'm not a yeller. I'm not full of foul language. I'm not super moody. I'm not aggressive. After lunch, I ended up with a stomach ache and horrible cramping from the stress of the entire situation--something that hasn't been happening for a long time.

Usually, my strategy is to shower them with graciousness. Keep being gracious and don't lose my cool. But it does NOT work with this office. No matter what you do, you lose.

As it turns out, when I went in for my appointment the next day the entire office staff glared at me and rolled their eyes at me. Dr. Pain walked into the exam room already angry. My conduct was wrong. I apologized. No one has ever apologized to me for his/her conduct in that office. And to treat patients rudely and 'punish' them for losing their cool under stressful circumstances is not a way to operate.

One of my favorite nurses (who works for my urologist) has told me that it doesn't matter how stressed she is, or that there isn't another nurse hired to replace the one who recently retired, or if a patient is upset with you--her job is to be gracious and NEVER take out her frustrations on the patient. Bravo Jackie!

Aaah, and we're just getting to the meaty part.

Wednesday August 22: Dr. Pain's office is gorgeous. The first time I walked in I thought, 'Wow, they have really made an effort to make this office warm and inviting. They have made such an effort to make it feel like it is not a medical institution.' But, immediately I was jarred out of that comfortable feeling by a rude receptionist. I'm not sure she knows how to smile.

Again, I took Mom with me for this appointment, as I was almost terrified to go.

When Dr. Pain walked into the office he stayed for less than five minutes. He literally stormed into the office. He did not greet me. He sat down and again began his mantra: "Now you listen to me. I cannot treat your ANS problems. I do not understand the ANS problems. You want Lyrica I can give you Lyrica."

Mom and I: "We understand that..."

Dr. Pain: "No, just listen to me. Now, I can give you Lyrica if that is want you want and if that is what Dr. ANS wants you to have. But, you need to know that I never, never talk to patients on the phone. Never. I am a severe dyslexic and I am a foreigner. I do not talk on the phone."

Me: "Okay. I have with me email exchanges with Dr. ANS describing what happened on the Neurontin."

Dr. Pain ignores this.

Me: "Dr. ANS was waiting for your call on Friday August 10 so that he could discuss things with you."

Dr. Pain: "He was not waiting for my call."

Me: "Yes, he was waiting for your call." In fact, I had received an email from Dr. ANS the morning of August 10Th in response to my email letting him know Dr. Pain was planning to call him, saying that he would look forward to Dr. Pain's call and speaking with him.

Dr. Pain: "No, he was not. Just like I won't call him, he won't call me. No doctor is going to take the time to call me. And I'm a busy man. I was out of town for 10 days. 10 days! I'm a very busy man. I will call him if I have time, if I have time."

Every word Dr. Pain speaks to me is angry and harsh. During this last sentence he gets up from his chair and begins to leave.

I say, calmly: "Dr. Pain, I understand that you are busy, but it is not fair to your patients to make them wait like this..."

Dr. Pain cuts me off, begins stepping out of the door and yells: "If you want to be my patient, you can be my patient. If you want Lyrica, I can give you Lyrica. It's your choice," and walks out, sharply closing the door behind him.

I say to Nurse Pain, who was present for the entire appointment: "Does he treat all of his patients this way?" And she says, "You have to understand he is a busy man."

Oh good grief! Aren't all doctors overwhelmed and overworked? Does that mean that they get to be rude? Aren't chronically ill people feeling overwhelmed and frustrated on a daily basis by their challenges? Does that give me permission to be rude to everyone? NO. I try every single day to put a smile on my face and treat others with respect.

After Dr. Pain leaves the office, I begin to dialogue with Nurse Pain. This is when I apologize for my 'behavior' the previous day.

As she is wrapping up, I ask her if she would like me to read her the list of symptoms I experienced on the Neurontin, as well as Dr. ANS's explanation as to why I need to treat my neuropathic pain in relation to my ANS symptoms. Nurse Pain explains that MA does not care WHY I failed at the Neurontin, they just need to know that I failed at it. She said that hopefully since Dr. Pain was going to put in the dictation that I fit the criteria for Fibromyalgia, I would get approval of the medication. (Lyrica was just recently approved by the FDA for Fibromyalgia).

However, when Toni received the illiterate dictation (which I described in an earlier post) it did not mention Fibromyalgia (or anything else that she could use for my case.).

I ask if perhaps they have samples. Nurse Pain comes back with the prescription and a coupon for 7 free tablets. She tells me it is for 14 free tablets. She counts the days on the calendar to tell me how long this will last me. I said that the problem is that Dr. ANS would prefer a dosing schedule of every day, not every other day, and this is why I really needed Dr. Pain and Dr. ANS to communicate. She tartly replies, "You will follow Dr. Pain's dosing schedule."

Dr. Pain prescribed Lyrica to me for a month at 25 mg every other day. This is NOTHING. And, he did not allow for me to increase if I was tolerating the medication. We had no discussion of dosing or a dosing schedule or a reasoning for his choice of dosing.

I say to Nurse Pain: "About how long does it take to begin to notice the effects of the Lyrica? I know with the Neurontin it takes about a month to get into your system."

Nurse Pain: "Now, I really think you need to think more positively about this."

I am completely shocked by this comment. Each time I leave the office, no one tells me about side effects, things to watch for, how long a medication takes to work, etc. I did not see asking how long it takes a medication to begin working as 'negative.'

I then try to ask nurse pain what else helps with neuropathic pain such as ice packs and heat packs.

She then turns to me and says, "Are you in counseling?"

At this point my mom says, "This is not a psychological issue. She has had 7 years of counseling."

I say: "I have been sick for nine years and have had a counseling for most of those years."

Nurse pain turns to me and sharply replies: "Well, clearly you haven't learned all of the coping mechanisms you need yet."

I'm completely befuddled and my mom takes over. Early on in my illness we fought tooth and nail to get a doctor to believe me. But it's been a long time since anyone has pulled the 'psychological issues' out of their pocket.

Nurse pain sits down next to my mom and says, "Now listen to me. A lot of our patients find a great deal of help by going to the support group for pain. That is how they learn things like whether heat or ice can help them and other ways to cope."

My mom explains that I have a very strong online support network of people with illnesses similar to mine, and many of those folks are also dealing with issues of pain. I note that I cannot sit up long enough to go to a meeting and again note how strong of a support network I already have. (She didn't ask me first if I had a support network, she just made the assumption that I 'needed' one.)

I wish in these moments I could come up with the perfect comebacks. I wish I would have thought to say how well I do cope, and how many people comment on that on a regular basis. I wish I'd had the courage to say, "I cope very well, except when I am being treated like this!"

I wish that I'd had the courage to say to Dr. Pain that it's nice that he got to go on vacation but my pain doesn't go on vacation just because he is on vacation. So, he should have taken care of the dictation before he left.

As Nurse Pain readies to leave the office she throws us for one more loop, that really put me over the top.

She says to me, "How can Dr. ANS treat you from a distance without seeing you? How can he have not seen you since 2004 and still treat you? How can he do that?"

I explain that he has made the decision that travel is too difficult for me and that he sees no reason that seeing him in person would change our decisions. I explain that I email with him on a regular basis, have phone consults with him, and can page him if need be and that he coordinates care with all of my doctors. She still says disapprovingly that she still does not understand how he can treat me.

Nurse Pain also states that she did not know that Dr. Pain was supposed to call Dr. ANS. I said that I had talked in depth about it to Nurse Pain #2. Nurse Pain says that Nurse Pain #2 didn't tell her this and so she didn't know. Nurse Pain says that she has to remind Dr. Pain to do these things or he does not remember!

Again, the office demonstrated it's lack of communication here. And, no personal responsibility was taken. When I first came in for my appointment, Nurse Pain asked about the records I said should be there. I said I had brought in detailed information about my pain and a letter from Dr. ANS. She snapped, "Well they aren't here, and we never lose records." Never? Are you sure they aren't sitting in Dr. Pain's house somewhere?

I don't know how to reply in these circumstances. They did lose my records. They did fail to communicate with one another. They did fail to coordinate care with Dr. ANS. They did not apologize. They were rude and condescending and demeaning. How can Nurse Pain question Dr. ANS in that way, when the care they are providing me is so sub-par.

All I can think is that during this appointment NOTHING was accomplished. Dr. ANS is the one that walked me through every moment of the Neurontin failure. I have access to him at any time. I'm baffled that I've just spent an hour at Dr. Pain's office just to get yelled at.

I'm flabbergasted that he did not mention how sick I had been on the Neurontin, or ask what happened that made me so sick. He has never asked me about my pain, has never examined me, and has not asked me about my experience on the Neurontin. The latter is a huge issue to me because I reacted so strongly to such a small dose of this medication. This is not unusual for me, but there is no documentation of this in their charts. Also, I question how a doctor can make the best decisions for me regarding new medication choices and dosing without understanding my past experiences.

I think what struck us the most was the comment by Dr. Pain that he is a severe dyslexic and a foreigner so he cannot talk on the phone. This explains why a nurse is present at all times during appointments and does all of the typing on the computer. I certainly want people with disabilities to have access to reasonable accommodations if it means they can perform the job well. Thank goodness for all of the technology we have today to help someone who is dyslexic.

I didn't realize however, that being a foreigner excused him from 'talking on the phone'. This is a major problem. If Dr. Pain cannot communicate with others (and his verbal problems are not the result of dyslexia) this means that he cannot appropriately coordinate care with other doctors, with his own nurses or with his patients. Why was he on call the night I phoned if he cannot talk on the phone? Scary.

I honestly believe that if Dr. Pain had simply made one five minute phone call to Dr. ANS before my visit, NONE of this would have happened. And I would not have had to deal with such treatment. I'm not asking for rocket science here. The two could have communicated about what medications to choose and why, and about a dosing schedule. Dr. ANS could have quickly briefed Dr. Pain on my underlying condition.

As I was checking out from my appointment, Nurse Pain comes out front and asks me if they can make copies of the email exchanges between myself and Dr. ANS. I said that I did not feel comfortable with them making copies of them all (as they had information not relevant to Dr. Pain) and she rolled her eyes at me and walked away. I had asked twice during the appointment if I could read the two short paragraphs in the emails that I thought were most helpful and both the doctor and nurse were not interested.

As Nurse Pain stepped out of the office at the end of my appointment to get the Lyrica coupon, I broke into tears. Mom and I agreed that I didn't want the nurse to see me crying because that way I was 'letting them win'. Unfortunately, I'm a crier, not a yeller. So, when I'm attacked I cry. I quickly said, "Tell me something funny." She pulled out the Martha Stewart Living magazine she'd been reading at the office and said, "Oh, here's something funny. Here's a recipe for Spotted Dick pudding." I did laugh hysterically right then and there. The rest of the day I just kept telling myself, "Spotted Dick Pudding. Spotted Dick Pudding." Well, if Martha Stewart can publish it in her magazine I can say it right? Mom topped it all off when she said, "He's not a spotted one. Just one without spots!"

I tried my darndest to find the recipe on Martha Stewart Living for that pudding, just for your own amusement, but to no avail!

As it turns out, after Toni, Dr. ANS and I worked tirelessly to submit a claim to the medical director at MA, Dr. Pain called Dr. ANS. He called Dr. ANS on Wednesday August 29th. I guess he decided despite being such a busy man and not being able to talk on the phone he could do these things.

All I know is that it was too little, too late.

The Lyrica was denied.

And Dr. Pain and his office staff had already demonstrated such poor conduct that it was too late.

What's at stake here? What's the bottom line?

1. Failure of communication between office staff.

2. Failure to provide adequate care (no examination, no questions about my pain, etc.)

3. Poor, demeaning, rude conduct and treatment of patients

4. Lack of coordination of care

5. Refusal to accept personal responibility for mistakes.

6. Lack of timeliness in getting things done, especially the dictation to MA.

7. Overstepping bounds of their scope knowledge (i.e. questioning my specialist's care, inappropriately approaching psychological issues)

8. Lack of availability of appointments

9. Inadequate documentation provided to MA (Nurse Pain told me that they are receiving all denials for Lyrica, however, I am wondering if it is because they are not providing proper documentation?)

And if I hear one more time, "Now you listen to me," or "I'm a busy man" I will scream!

Here's to pain free days: free of Dr. Pain AND free of neck pain!

Emily

P.S. Yes, I realize this post is a bit repetitive and could use some serious editing, but I'm thoroughly exhausted and cannot expend one more ounce of energy on Dr. Pain! Sorry for the poor writing this time around (and for the grammatical and puncuation errors!).