To my family and friends who celebrate:
Happy Easter!
And to everyone, Happy Spring!
(Our first full day of Spring was followed by a blanket of snow on the ground this morning!)
Photos: Abbie's got the house all decorated for Easter at D and A's!
Saturday, March 22, 2008
Friday, March 21, 2008
Hope-filled HillRaiser for Hillary!
One month from today Pennsylvanians will vote, making their choice for the democratic candidate for president in November 2008.
I have struggled to find ways, given my limited energy, to 'do my share' in helping to get Hillary Clinton elected.
I've decided to ask others who support Hillary to join me in helping to support her campaign in whatever ways you can. You can keep up to date on the campaign at http://www.hillaryclinton.com/.
I have decided to be a grassroots fundraiser through my blog and email.
I have been assigned a personal fundraising link. At the Team Hillary Action Center I can track all contributions made through this link. The link will be good indefinitely. Just click on this link to make your contribution! Voila! You've helped bring Hillary one step closer to the White House.
MY HILLRAISERS LINK:
www.hillaryclinton.com/contribute/GNVS
Please understand that I am only using my blog and email as a way to reach fellow Hillary supporters, not to pressure anyone into donating or to push my views on you.
I hope those of you who support Hillary will consider making a donation--even if you feel you can only give $10, it counts! As I heard on NPR last night, small repeat donors are making the difference in this campaign. You don't need to give big for it to matter.
We're part of Team Hillary and it will be fun for us to track our own impact on this campaign by seeing how much we donate as a team!
Please note: that as a team we will be able to track the amount of donations made, but I will not see your name so your donation and the amount you donated will remain anonymous.
Never in my life have I felt strongly about donating to a campaign. This year is different. Why? Because I feel that our country and the world need Hillary Clinton as president. On a personal level, I need Hillary Clinton as president
That her detailed, yet realistic, approaches to the Iraq war, foreign policy, health-care, the faltering economy, education, the environment and other domestic issues will bring America back to being a respected and thriving nation.
That she will remember all of the most vulnerable and marginalized members of our society: women and children, the poor, the disabled, the elderly. She will, hands down, have the best policies for women, family and children our nation has ever seen.
That we know what we're getting with Hillary Clinton--flaws and all. I have always admired her grace and triumph over adversity over the many years she has been in public life.
That Hillary works across party lines and will unite our country. Even John McCain, for whom I have a lot of respect, has spoken of his respect for Hillary Clinton as a politician who works across party lines, works well with others, keeps her word, and works hard.
That Hillary is, in a sense, 'living change' because she has spent her whole life fighting to succeed as a woman. For those of you who feel that it's unfair to have a Bush-Clinton-Bush-Clinton 'dynasty' in America, I ask you to think of what most women in America do. They follow their husbands. Don't punish Hillary for allowing her husband to be president first. Evaluate her as her own person, as her own candidate.
That, as my Dad says: Opportunity effects Aspiration. If women and little girls see that something can be done, they are more willing to try to achieve it themselves. What will we tell our little girls? What will we tell our mothers who fought for women's rights?
That Hillary is one heck of a fighter and she will fight for all of us. As she said after the March 4Th primaries:
Some people were ready to count us out. But you and I proved them wrong, just as we have every time they tried to declare this race over prematurely. And we're going to keep showing them exactly what we can do.
We're going to do it for everyone across America who's been counted out -- but refused to be knocked out. For everyone who's stumbled -- but stood right back up. And for everyone who works hard -- but never gives up.
I identify strongly with this statement on a personal level. It is so hard to get up every day and fight for healing, fight to get better. Hillary is not going to give up on America or on you.
Please help me to help Hillary win BIG in Pennsylvania and carry the momentum all the way to the White House.
This link will be good indefinitely.
I cannot wait to see Hillary Clinton sworn in as President of the United States of America!
Thank you for your support!
Blessings,
Emily
P.S. Previous blog entries on Hillary are as follows. The first link will share with you even more of the reasons I am passionate about Hillary.
If not now when?:
http://adancinglight.blogspot.com/2008/03/weekend-lyrics-awakening-what-happens.html
Me in my Hillary Gear: http://adancinglight.blogspot.com/2008/03/hillary-gear.html
Mom in her Hillary Gear and campaigning for Hillary in PA (Hillary Gear is available at http://www.hillaryclinton.com/) There's lots of fun stuff!:
http://adancinglight.blogspot.com/2008/03/how-mom-spent-her-first-night-out.html
I have struggled to find ways, given my limited energy, to 'do my share' in helping to get Hillary Clinton elected.
I've decided to ask others who support Hillary to join me in helping to support her campaign in whatever ways you can. You can keep up to date on the campaign at http://www.hillaryclinton.com/.
I have decided to be a grassroots fundraiser through my blog and email.
I have been assigned a personal fundraising link. At the Team Hillary Action Center I can track all contributions made through this link. The link will be good indefinitely. Just click on this link to make your contribution! Voila! You've helped bring Hillary one step closer to the White House.
MY HILLRAISERS LINK:
www.hillaryclinton.com/contribute/GNVS
Please understand that I am only using my blog and email as a way to reach fellow Hillary supporters, not to pressure anyone into donating or to push my views on you.
I hope those of you who support Hillary will consider making a donation--even if you feel you can only give $10, it counts! As I heard on NPR last night, small repeat donors are making the difference in this campaign. You don't need to give big for it to matter.
We're part of Team Hillary and it will be fun for us to track our own impact on this campaign by seeing how much we donate as a team!
Please note: that as a team we will be able to track the amount of donations made, but I will not see your name so your donation and the amount you donated will remain anonymous.
Never in my life have I felt strongly about donating to a campaign. This year is different. Why? Because I feel that our country and the world need Hillary Clinton as president. On a personal level, I need Hillary Clinton as president
Politics have always mattered to me, have always been personal to me. I grew up watching the 6:30 news with Tom Brokaw and listening to my parents talk endlessly about current events, politics, and of course, the world through the lens of Sociology. Their passion for social issues, social change and social justice became a part of me also. I have always been passionate about who governs and how they govern. I have always been passionate about caring for our citizens and the citizens of the world.
Now as a person with a disability, I see even more clearly and personally the injustices in our society. I see my friends on DINET lose their homes, be unable to get the medical care they need, or relentlessly be turned down for SSI or SSDI. This year politics feel more personal than ever. I feel as if we have lost eight years of hope. I feel this most deeply in the areas of medical research and in terms of caring for our sick, but I also feel it with the Iraq war, our relationships around the world, our environment, our educational system, and so much more.
How we treat our sick and disabled citizens, health care, and medical research is unacceptable and unbearable to me. We need a president who will be a voice for citizens like me. No one should live or die because of their health care (or lack thereof). Period. No one should go broke trying to pay medical bills. Period. No one should have access to the best health care only because they can afford it. Period.
I believe:
That Hillary is the most qualified candidate to bring real change and 'real solutions'. Every time I hear her speak I am so impressed by her incredible depth, breadth, knowledge, thoughtfulness, and balance on every topic discussed. She makes me say: "Wow. I want her in the White House!"
That Hillary's impressive and extensive foreign policy experience and knowledge are the keys to repairing our relationships around the world. Do you hear my friend, Corina, cheering for her in the Netherlands? :)
That her detailed, yet realistic, approaches to the Iraq war, foreign policy, health-care, the faltering economy, education, the environment and other domestic issues will bring America back to being a respected and thriving nation.
That she will remember all of the most vulnerable and marginalized members of our society: women and children, the poor, the disabled, the elderly. She will, hands down, have the best policies for women, family and children our nation has ever seen.
That we know what we're getting with Hillary Clinton--flaws and all. I have always admired her grace and triumph over adversity over the many years she has been in public life.
That Hillary works across party lines and will unite our country. Even John McCain, for whom I have a lot of respect, has spoken of his respect for Hillary Clinton as a politician who works across party lines, works well with others, keeps her word, and works hard.
That Hillary is, in a sense, 'living change' because she has spent her whole life fighting to succeed as a woman. For those of you who feel that it's unfair to have a Bush-Clinton-Bush-Clinton 'dynasty' in America, I ask you to think of what most women in America do. They follow their husbands. Don't punish Hillary for allowing her husband to be president first. Evaluate her as her own person, as her own candidate.
That, as my Dad says: Opportunity effects Aspiration. If women and little girls see that something can be done, they are more willing to try to achieve it themselves. What will we tell our little girls? What will we tell our mothers who fought for women's rights?
That Hillary is one heck of a fighter and she will fight for all of us. As she said after the March 4Th primaries:
Some people were ready to count us out. But you and I proved them wrong, just as we have every time they tried to declare this race over prematurely. And we're going to keep showing them exactly what we can do.
We're going to do it for everyone across America who's been counted out -- but refused to be knocked out. For everyone who's stumbled -- but stood right back up. And for everyone who works hard -- but never gives up.
I identify strongly with this statement on a personal level. It is so hard to get up every day and fight for healing, fight to get better. Hillary is not going to give up on America or on you.
Please help me to help Hillary win BIG in Pennsylvania and carry the momentum all the way to the White House.
This link will be good indefinitely.
I cannot wait to see Hillary Clinton sworn in as President of the United States of America!
Thank you for your support!
Blessings,
Emily
P.S. Previous blog entries on Hillary are as follows. The first link will share with you even more of the reasons I am passionate about Hillary.
If not now when?:
http://adancinglight.blogspot.com/2008/03/weekend-lyrics-awakening-what-happens.html
Me in my Hillary Gear: http://adancinglight.blogspot.com/2008/03/hillary-gear.html
Mom in her Hillary Gear and campaigning for Hillary in PA (Hillary Gear is available at http://www.hillaryclinton.com/) There's lots of fun stuff!:
http://adancinglight.blogspot.com/2008/03/how-mom-spent-her-first-night-out.html
Thursday, March 20, 2008
How Mom Spent Her First 'Night Out'...
When I woke up yesterday, Mom was all dressed in her new Hillary gear. I love this shirt!
As a woman who is part of Hillary's generation, Mom is very emotionally invested in this campaign and having Hillary as president.
Mom watched her own career and opportunities be cut short in ways simply because she was a woman, not because she was not capable. So, she very much wants to see Hillary break that glass ceiling for all of us women. She even got quoted in our local paper talking about this! :)
We also all believe that Hillary is the most qualified candidate.
So, here she is in her very own Hillary gear ready to go to the grand opening of the Hillary Headquarters in our town.
It was packed full of people and enthusiasm!
Blessings (and have a great week Mom!)
Emily
Wednesday, March 19, 2008
Settling In At D and A's
It's Wednesday evening and I am just settling in for a week long stay with Dad and Abbie (D and A for short.)
Asher and I arrived this afternoon (along with everything but the kitchen sink, it seems). Abbie went above and beyond to buy all of my special foods, have everything set up for me, and all the little details in place. I really can't give Dad credit for all of this--he just gets lots of points in the enthusiasm department! (Sorry Dad). Tonight his big job was to slice a loaf of gluten-free bread. As he did so, I felt pained as I watched him mangle the loaf of bread. I'm still not quite sure how these 'slices' will be made into sandwiches. Abbie said, "Emily! Don't watch! Listen to me I am telling you a story! Don't watch! That is how I have survived staying married to him all of this time!" Okay, I have to admit I about keeled over laughing. Dad thinks he did a very good job slicing the bread. Maybe an 'A' for effort, but definitely an 'A' for humor. I expect there to be no shortage of entertainment and laughs while I am here.
I arrived this afternoon after much packing, organizing and help from Mom, shopping and cleaning by Abbie, etc. Asher even had his own little bag packed (as seeing the suitcase being packed up for me had him very anxious!). Mom unloaded and organized everything here and I'm set up in the basement which is like having my own little apartment. Today, so far, I've enjoyed a nap, dinner with Dad and Abbie, and an episode of Gilmore Girls Season 2 on the new TV, DVD and furniture D and A have down here. And the bedroom (formerly Monica's room) is purple just like mine. It's been so many years since I've been to their house that there are so many new things to see!
The biggest obstacle here is the flight of stairs, since I can't do stairs at all. Well, going down the stairs is not a problem but going UP is a big problem. So, of course Farmer Dad has a plan for this. He used his Buick Rendezvous (yes, every car he owns must be a Buick) to drive around to the basement (which is on a slope so is very bright and open) and picked me up for dinner. He even had the seat warmer on! Such service! I think we should drive the John Deere tractor instead. I hope that with all of this wet weather we are not going to ruin the grass doing this--or he's going to have grass to replant this spring.
Otherwise, I think I've brought just about everything I could need and if I haven't Abbie has bought it! Asher's here to keep me company. I can't believe how much work it was to pack for a stay at a location only 2o minutes away.
I have not stayed with Dad and Abbie since 2004. The last time I was at their house was Christmas of 2004 before my last gallbladder attack and subsequent surgery.
So what prompted this week-long stay? Well, we're all trying to find ways to cope with what we are going through. We're all trying to find ways to deal with the stress levels. Mom has not had a break at all for a very long time. I used to stay with Dad and Abbie on a regular basis to give Mom the house to herself, some alone time, and a break from all of the cooking and chores. The intensity of all of this work has only increased since 2005, and Mom needs a break. She's understandably worn out and exhausted and we all hope that this will be good for all of us. I give my Dad, Abbie and Mom a lot of credit for working on this all together as a team, uniting in what could be seen as a most awkward family situation, and hanging on through this past 10 years of crap. Dad and Abbie have been instrumental in really helping to figure out a way to make it so that I could come here and so that Mom could get a break.
Mom was so giddy with excitement about the week ahead! I had to laugh because I knew how excited she was but she didn't want to show it and make me feel badly. But, hey...who doesn't want a break from mothering, from cooking dinner every night, from taking care of all of my needs (and Asher's too)? I hope so much she'll have a good week and enjoy having the house to herself. (Mom you had better watch a movie on that nice TV upstairs!)
What I am most looking forward to doing here at Dad and Abbie's is trying to take some down time and do just five things:
1. Spend lots of quality time with Dad and Abbie. I don't see either of them as much as I would like and it's nice that we will have all of our meals together. I will also see my step-sisters and their husbands on Easter Sunday for the first time since Christmas day 2004.
2. Write, write, and write some more on my blog. I have had so much going on and happening that it's time for lots of updating. I can't believe I haven't blogged since March 4Th! I really struggle when I don't have time or energy to write and hope that this week will allow for at least some writing. Dad does get major credit for helping me get set up in the recliner in a way that I can use my computer and be reclined. (DINET friends who need to recline--I just purchased this really cool contraption called a Laptop Laid Back and it is fantastic, very portable, and according to Dad, very easy to assemble. Actually, anyone who likes to recline and type might really like this tool.)
3. Watch Davidson kick butt in the NCAA tournament on Friday afternoon! Goooo Wildcats. Dad and I are going to watch the game and dine on PB and J sandwiches (mine on the professionally sliced bread). I can't wait!
4. Rest and relax and take some 'me' time. Books on tape; Gilmore Girls on DVD (I have owned Season 2 for many years now and still have never watched it! Sarah and Jeannine have borrowed it and seen it already...how sad is that? At least I've gotten my money's worth out of this purchase); Listen to music; Cuddle with Asher.
5. Hope and try to find a little peace, balance and quiet after all of the storms lately.
Blessings,
Emily
Asher and I arrived this afternoon (along with everything but the kitchen sink, it seems). Abbie went above and beyond to buy all of my special foods, have everything set up for me, and all the little details in place. I really can't give Dad credit for all of this--he just gets lots of points in the enthusiasm department! (Sorry Dad). Tonight his big job was to slice a loaf of gluten-free bread. As he did so, I felt pained as I watched him mangle the loaf of bread. I'm still not quite sure how these 'slices' will be made into sandwiches. Abbie said, "Emily! Don't watch! Listen to me I am telling you a story! Don't watch! That is how I have survived staying married to him all of this time!" Okay, I have to admit I about keeled over laughing. Dad thinks he did a very good job slicing the bread. Maybe an 'A' for effort, but definitely an 'A' for humor. I expect there to be no shortage of entertainment and laughs while I am here.
I arrived this afternoon after much packing, organizing and help from Mom, shopping and cleaning by Abbie, etc. Asher even had his own little bag packed (as seeing the suitcase being packed up for me had him very anxious!). Mom unloaded and organized everything here and I'm set up in the basement which is like having my own little apartment. Today, so far, I've enjoyed a nap, dinner with Dad and Abbie, and an episode of Gilmore Girls Season 2 on the new TV, DVD and furniture D and A have down here. And the bedroom (formerly Monica's room) is purple just like mine. It's been so many years since I've been to their house that there are so many new things to see!
The biggest obstacle here is the flight of stairs, since I can't do stairs at all. Well, going down the stairs is not a problem but going UP is a big problem. So, of course Farmer Dad has a plan for this. He used his Buick Rendezvous (yes, every car he owns must be a Buick) to drive around to the basement (which is on a slope so is very bright and open) and picked me up for dinner. He even had the seat warmer on! Such service! I think we should drive the John Deere tractor instead. I hope that with all of this wet weather we are not going to ruin the grass doing this--or he's going to have grass to replant this spring.
Otherwise, I think I've brought just about everything I could need and if I haven't Abbie has bought it! Asher's here to keep me company. I can't believe how much work it was to pack for a stay at a location only 2o minutes away.
I have not stayed with Dad and Abbie since 2004. The last time I was at their house was Christmas of 2004 before my last gallbladder attack and subsequent surgery.
So what prompted this week-long stay? Well, we're all trying to find ways to cope with what we are going through. We're all trying to find ways to deal with the stress levels. Mom has not had a break at all for a very long time. I used to stay with Dad and Abbie on a regular basis to give Mom the house to herself, some alone time, and a break from all of the cooking and chores. The intensity of all of this work has only increased since 2005, and Mom needs a break. She's understandably worn out and exhausted and we all hope that this will be good for all of us. I give my Dad, Abbie and Mom a lot of credit for working on this all together as a team, uniting in what could be seen as a most awkward family situation, and hanging on through this past 10 years of crap. Dad and Abbie have been instrumental in really helping to figure out a way to make it so that I could come here and so that Mom could get a break.
Mom was so giddy with excitement about the week ahead! I had to laugh because I knew how excited she was but she didn't want to show it and make me feel badly. But, hey...who doesn't want a break from mothering, from cooking dinner every night, from taking care of all of my needs (and Asher's too)? I hope so much she'll have a good week and enjoy having the house to herself. (Mom you had better watch a movie on that nice TV upstairs!)
What I am most looking forward to doing here at Dad and Abbie's is trying to take some down time and do just five things:
1. Spend lots of quality time with Dad and Abbie. I don't see either of them as much as I would like and it's nice that we will have all of our meals together. I will also see my step-sisters and their husbands on Easter Sunday for the first time since Christmas day 2004.
2. Write, write, and write some more on my blog. I have had so much going on and happening that it's time for lots of updating. I can't believe I haven't blogged since March 4Th! I really struggle when I don't have time or energy to write and hope that this week will allow for at least some writing. Dad does get major credit for helping me get set up in the recliner in a way that I can use my computer and be reclined. (DINET friends who need to recline--I just purchased this really cool contraption called a Laptop Laid Back and it is fantastic, very portable, and according to Dad, very easy to assemble. Actually, anyone who likes to recline and type might really like this tool.)
3. Watch Davidson kick butt in the NCAA tournament on Friday afternoon! Goooo Wildcats. Dad and I are going to watch the game and dine on PB and J sandwiches (mine on the professionally sliced bread). I can't wait!
4. Rest and relax and take some 'me' time. Books on tape; Gilmore Girls on DVD (I have owned Season 2 for many years now and still have never watched it! Sarah and Jeannine have borrowed it and seen it already...how sad is that? At least I've gotten my money's worth out of this purchase); Listen to music; Cuddle with Asher.
5. Hope and try to find a little peace, balance and quiet after all of the storms lately.
Blessings,
Emily
P.S.
GO
WILDCATS!!!
(Friday afternoon 12:25 ET on CBS)
Tuesday, March 04, 2008
Hillary Gear!
As you can see, I'm dressed appropriately for the March 4th primaries!
All dressed in my Hillary Gear!
I thought Marla especially would appreciate these pictures! :)
We've been having fun going back and forth with each other about politics and the election. I like to tease her because she's a Democrat turned Republican on me. I'm glad we can have this back and forth with a mutual understanding that friendship matters more than our political views. But we do like to have at it a bit!
We've been having fun going back and forth with each other about politics and the election. I like to tease her because she's a Democrat turned Republican on me. I'm glad we can have this back and forth with a mutual understanding that friendship matters more than our political views. But we do like to have at it a bit!
Go Hillary!
Emily
Lyme Log: Play. Pause. Stop. Rewind. Play. Pause...Leaves Us at a Transition Point
I've been avoiding writing a Lyme update. Somehow it seems easier, no matter how sick I am, to distract myself in a world writing about other things.
Still, I'm long overdue to update you all on what is really going on in my life medically. I think it's easier for me to articulate how I feel about Hillary Clinton for president than it is for me to articulate all of the health stuff! So, please bear with me on this blog entry! I'm hoping that by putting the health stuff out there I will feel less immobilized in other ways. For example, I find that I cannot even start an email to someone because it's so hard to answer how I am or to say what is going on health-wise. I'm not sure that makes a whole lot of sense--but the only place I'm not immobilized in my life right now by the stuff going on is through my blogging/writing.
After two years of treatment and 338 little minocylcine pills later, we find ourselves at a crossroads in my medical treatment. As I write this blog, I am anxiously awaiting emails and phone calls from various members of my medical team. I've 'called in the troops', as I say--Dr. ANS, Dr. Lyme and my new PCP--to work together to help create a new, and possibly more hopeful or successful treatment path.
My parents and 'Mommy' Bev have been walking me through the emotions and the next steps to take. Bev, a Lymie herself, is able to calm me down and to help me see outside of my box when I am in crisis and look at the options available to me. Without her help, I would not have the clarity I had in being able to really ask the doctors for what I wanted and needed.
The past six months have been especially challenging and difficult. I said in my entry acknowledging my depression that I was acutely aware of the trigger for the depression. Well, the trigger was, in many ways, my December phone consult with my Lyme doctor. However, my mood had steadily been going downhill in October and November as I worked to increase treatment and felt lousy all of the time.
The other day our neighbor, Anne, stopped over.
She said to my mom: "Does Emily feel as bad as she looks?"
Yup, that about sums it up. At least the two are congruent. Usually it's "Oh, but you look so good!" It was almost a relief, and somewhat validating, to know I looked the way I felt. Anne really can crack me up! This is pretty much how the past six months have been, without any relief.
During the summer, we started to feel that we were seeing some progress, however glacial in nature. In order to really and truly kill off the Lyme I need to continue increasing my doses of antibiotics, make myself sicker, and hope that I see 'windows' in between of feeling better.
I have not had a 'window' of feeling any better since October. I'm tired and frustrated. I feel like I am pushing so hard, working so hard, and making myself so sick without seeing any progress.
Catching up:
Let me explain a bit why I chose the phrase Play. Pause. Stop. Rewind. Play. Pause.
Play:
During the months of October and November I chose to increase my dose of minocycline. At this point I continue to take no more than about 5 of those little 50 mg pills a week, which is a teeny tiny dose. I increase in increments such as taking doses as follows: 2 days of mino, one day off, 2 days of mino, one day off, 2 days of mino, etc. Then, an increase would be to start taking the following: 2 days on/one day off/3 days on/one day off/2 days on/one day off/repeat. Cousin Jan: I bet you can imagine what a joy this is to keep track of in those pill packs!
Still, just adding that one pill in over the course of several days makes me very, very sick.
I had the attitude that if I made myself really sick through the months of October and November, I would be done herxing by the time all of my visitors arrived for the holidays. Instead, six weeks into the second increase, I found myself even sicker--pajama day after pajama day (and not the good kind of PJ day that I love!), weak, ashen in color, no appetite, and all of the other miserable ANS symptoms, fatigue and pain I experience.
In mid-December I spoke with Dr. Lyme. He suggested that I return to the dose I was on when I saw him in September and was doing 'well'. He said that I had been overzealous in my efforts to increase the minocycline. Dr. Lyme hoped that I would return to the baseline level I was at when I saw him in September while also continuing to improve slowly on the lower dose.
After this phone consult, I felt so incredibly sad and deflated. I began to feel a sense of wondering how I could EVER get better if I can't increase the medication successfully. At the rate I have been progressing over the past two years (and sometimes it's hard to see that there has been any progress) it's difficult to see how we can get me better.
My dad was here that evening for dinner and as he came to tuck me into bed, I began to cry out in pain. I sobbed, "I just want this to be over for all of us. I was just trying to get better faster. And it's not working. I just want to get better." Of course, my dad lost it too. One of the most painful parts of this illness is watching what it does to my parents. I have never seen my dad cry as much as I have since I have been sick. Often, my parents both suffer quietly, rarely letting on how much pain they are really feeling. Still, I know it's there and how deep it is. And this is overwhelming.
Stop:
By mid-December I was so sick from the mino and the increase that I ended up taking a week off of the medication. This is the first time since starting the mino that I have had to stop (unlike the first go around with the doxycycline that landed me as sick as I was post-GB surgery). Then I did a week at every other day just to ease my body back into the medication.
Rewind. Play:
I resumed the dosing schedule I had been on in September--which felt like a HUGE step backwards. Over the next two months I did not return to any sort of baseline or level of functioning I had experienced over the summer at this dose. I neither regained my previous level of 'well-being' or saw any progress forward as we had hoped.
Mix this in with the following factors: feeling too sick to enjoy my holiday visitors; cold, dreary winter weather; family stress (which is too personal to blog about); the beginning of a new year which will mark my 10 year anniversary of getting sick. The result: A recipe for increased depression and anxiety.
So, my depression really began when I pushed so hard and saw no improvement, when I began to feel that no matter how hard I was trying I wasn't getting anywhere and when I began to wonder if we were even on the right track. The mind can really go into spin cycle! Then my mood has been fueled by various other factors.
Forward:
In February, after no improvement or return to baseline, I made the decision on my own to try an increase in the mino again. What did I have to lose? I already felt like crappola! I ended up with another awful herx. I am also beginning to feel that the mino is too hard on my stomach because I end up so nauseous, sick to my stomach and in excruciating pain that I cannot eat. When jello sounds good to me, I know I don't feel well! Ugh. The mino feels like it is ripping up my insides!
On February 21st I had another phone consult with Dr. Lyme. This time he felt that perhaps I had not been making myself sick enough to make progress in treatment. This was, of course, the opposite of what he had said in December.
The conversation was frustrating because we spoke for 20 minutes, at which point I thought that we had agreed to try a new antibiotic, and then he took a call from another patient for a phone consult. After that, he called me back, but I felt we had lost our train of thought and where we were at in the earlier conversation.
I came out of the conversation frustrated and confused. In the end, Dr. Lyme wanted me to stay the course on the minocycline because he believes it is working (which, in reality, in some sense it is because it is still making me this sick). I was pushing back at him to change paths because I feel that I want to see if another medication will help me to progress more quickly, even if it does make me sicker.
I began to question everything: Do I really have Lyme? Can I ever get better? Should I be getting a second opinion? Where do we go from here? What antibiotic do I want to try? These are the times my Mommy Bev walks me through each step with patience and wisdom. My parents and I are so enmeshed in the situation (and clueless about Lyme on so many levels) that, for me, having Mommy Bev is a lifeline.
What I think that I want is to try a different antibiotic, called bicillin, in the form of shots. It's a bit more aggressive, but not as aggressive as IV antibiotics. I am feeling that if I don't try something different, I will always wonder, "What if I had tried such and such? Would I have gotten better faster?" I am so committed to getting better and fighting this...but sometimes it feels like fighting one heck of a riptide. Should I just let go and see where it takes me? See where I end up on the shore? Am I pushing too hard against the Lyme or not hard enough? As you can see, the last few months have left me feeling shaky and scared on the medical front. Finding the balance between letting go and pushing back is a difficult one--and patience, as always, is the most important thing to try to maintain.
Rewind:
I am now back on the baseline summer/September dose while I wait (patiently, of course. Ha!) for the doctors to coordinate things.
Pause. Wait for a transition. Choose the next road.
So, where does this leave me? Waiting.
I have backed off of the mino in hopes that I will at lest be a wee bit less sick than I have been.
I have emailed extensively with Dr. ANS and we are also planning to have a phone consult. I have also written a letter to Dr. Lyme and Dr. PCP. Dr. ANS is planning on consulting with Dr. Lyme. Hopefully, all of these actions and acts of coordination of care will result in a decision about where we go from here. There are many options to weigh. No answer is easy. And no choice guarantees anything. We have a lot to decide and discuss.
I have a deep trust in Dr. ANS that I do not have in any other doctor. I feel better simply having him 'working on things' from his end and not trying to figure it all out on my own. At this point, I do not have the knowledge to make the best decision for my care, so I am letting go and waiting to see where he thinks we should go from here. I have a sense of relief in knowing that I'm not in this alone. I wish I could contribute a million dollars to this doctor's research funds! He's that amazing.
I will not go into the details here, as I have written enough. But when I do have a sense of where we go from here, I will be better about trying to keep you up to date!
My first visitors of 2008 arrive this upcoming weekend. Carrie and Britt will be here for a three night visit. I need the emotional and spiritual lift of this visit more than anything right now. So, I am praying that I will not be too sick to enjoy at least a good part of it. Carrie is six months prego and this will be our last all girls weekend before the baby arrives. I've only met Britt once before for about 10 whole minutes, so I want to be able to get to know her and enjoy her fantastic cooking. She is planning to be head chef and Carrie will be sous-chef! How lucky am I??? We are going to be bums and hang out in our PJs I hope! :) I really LOVE 'good pajama days'--the kind you CHOOSE to stay in your PJs--not the kind when you are forced to out of feeling to crappy.
I thank all of you for your continued support and understanding while I try to find my way again. Trying to find my way emotionally, spiritually, and medically is taking all of the energy I can muster. I apologize for all of the unanswered emails in my inbox. Each message is treasured, even if it is not answered in writing. Right now, I am using my blog as my primary method of reaching out and connnecting with others. You're support of my latest blogs has been quite remarkable!
Blessings,
Emily
Still, I'm long overdue to update you all on what is really going on in my life medically. I think it's easier for me to articulate how I feel about Hillary Clinton for president than it is for me to articulate all of the health stuff! So, please bear with me on this blog entry! I'm hoping that by putting the health stuff out there I will feel less immobilized in other ways. For example, I find that I cannot even start an email to someone because it's so hard to answer how I am or to say what is going on health-wise. I'm not sure that makes a whole lot of sense--but the only place I'm not immobilized in my life right now by the stuff going on is through my blogging/writing.
After two years of treatment and 338 little minocylcine pills later, we find ourselves at a crossroads in my medical treatment. As I write this blog, I am anxiously awaiting emails and phone calls from various members of my medical team. I've 'called in the troops', as I say--Dr. ANS, Dr. Lyme and my new PCP--to work together to help create a new, and possibly more hopeful or successful treatment path.
My parents and 'Mommy' Bev have been walking me through the emotions and the next steps to take. Bev, a Lymie herself, is able to calm me down and to help me see outside of my box when I am in crisis and look at the options available to me. Without her help, I would not have the clarity I had in being able to really ask the doctors for what I wanted and needed.
The past six months have been especially challenging and difficult. I said in my entry acknowledging my depression that I was acutely aware of the trigger for the depression. Well, the trigger was, in many ways, my December phone consult with my Lyme doctor. However, my mood had steadily been going downhill in October and November as I worked to increase treatment and felt lousy all of the time.
The other day our neighbor, Anne, stopped over.
She said to my mom: "Does Emily feel as bad as she looks?"
Yup, that about sums it up. At least the two are congruent. Usually it's "Oh, but you look so good!" It was almost a relief, and somewhat validating, to know I looked the way I felt. Anne really can crack me up! This is pretty much how the past six months have been, without any relief.
During the summer, we started to feel that we were seeing some progress, however glacial in nature. In order to really and truly kill off the Lyme I need to continue increasing my doses of antibiotics, make myself sicker, and hope that I see 'windows' in between of feeling better.
I have not had a 'window' of feeling any better since October. I'm tired and frustrated. I feel like I am pushing so hard, working so hard, and making myself so sick without seeing any progress.
Catching up:
Let me explain a bit why I chose the phrase Play. Pause. Stop. Rewind. Play. Pause.
Play:
During the months of October and November I chose to increase my dose of minocycline. At this point I continue to take no more than about 5 of those little 50 mg pills a week, which is a teeny tiny dose. I increase in increments such as taking doses as follows: 2 days of mino, one day off, 2 days of mino, one day off, 2 days of mino, etc. Then, an increase would be to start taking the following: 2 days on/one day off/3 days on/one day off/2 days on/one day off/repeat. Cousin Jan: I bet you can imagine what a joy this is to keep track of in those pill packs!
Still, just adding that one pill in over the course of several days makes me very, very sick.
I had the attitude that if I made myself really sick through the months of October and November, I would be done herxing by the time all of my visitors arrived for the holidays. Instead, six weeks into the second increase, I found myself even sicker--pajama day after pajama day (and not the good kind of PJ day that I love!), weak, ashen in color, no appetite, and all of the other miserable ANS symptoms, fatigue and pain I experience.
In mid-December I spoke with Dr. Lyme. He suggested that I return to the dose I was on when I saw him in September and was doing 'well'. He said that I had been overzealous in my efforts to increase the minocycline. Dr. Lyme hoped that I would return to the baseline level I was at when I saw him in September while also continuing to improve slowly on the lower dose.
After this phone consult, I felt so incredibly sad and deflated. I began to feel a sense of wondering how I could EVER get better if I can't increase the medication successfully. At the rate I have been progressing over the past two years (and sometimes it's hard to see that there has been any progress) it's difficult to see how we can get me better.
My dad was here that evening for dinner and as he came to tuck me into bed, I began to cry out in pain. I sobbed, "I just want this to be over for all of us. I was just trying to get better faster. And it's not working. I just want to get better." Of course, my dad lost it too. One of the most painful parts of this illness is watching what it does to my parents. I have never seen my dad cry as much as I have since I have been sick. Often, my parents both suffer quietly, rarely letting on how much pain they are really feeling. Still, I know it's there and how deep it is. And this is overwhelming.
Stop:
By mid-December I was so sick from the mino and the increase that I ended up taking a week off of the medication. This is the first time since starting the mino that I have had to stop (unlike the first go around with the doxycycline that landed me as sick as I was post-GB surgery). Then I did a week at every other day just to ease my body back into the medication.
Rewind. Play:
I resumed the dosing schedule I had been on in September--which felt like a HUGE step backwards. Over the next two months I did not return to any sort of baseline or level of functioning I had experienced over the summer at this dose. I neither regained my previous level of 'well-being' or saw any progress forward as we had hoped.
Mix this in with the following factors: feeling too sick to enjoy my holiday visitors; cold, dreary winter weather; family stress (which is too personal to blog about); the beginning of a new year which will mark my 10 year anniversary of getting sick. The result: A recipe for increased depression and anxiety.
So, my depression really began when I pushed so hard and saw no improvement, when I began to feel that no matter how hard I was trying I wasn't getting anywhere and when I began to wonder if we were even on the right track. The mind can really go into spin cycle! Then my mood has been fueled by various other factors.
Forward:
In February, after no improvement or return to baseline, I made the decision on my own to try an increase in the mino again. What did I have to lose? I already felt like crappola! I ended up with another awful herx. I am also beginning to feel that the mino is too hard on my stomach because I end up so nauseous, sick to my stomach and in excruciating pain that I cannot eat. When jello sounds good to me, I know I don't feel well! Ugh. The mino feels like it is ripping up my insides!
On February 21st I had another phone consult with Dr. Lyme. This time he felt that perhaps I had not been making myself sick enough to make progress in treatment. This was, of course, the opposite of what he had said in December.
The conversation was frustrating because we spoke for 20 minutes, at which point I thought that we had agreed to try a new antibiotic, and then he took a call from another patient for a phone consult. After that, he called me back, but I felt we had lost our train of thought and where we were at in the earlier conversation.
I came out of the conversation frustrated and confused. In the end, Dr. Lyme wanted me to stay the course on the minocycline because he believes it is working (which, in reality, in some sense it is because it is still making me this sick). I was pushing back at him to change paths because I feel that I want to see if another medication will help me to progress more quickly, even if it does make me sicker.
I began to question everything: Do I really have Lyme? Can I ever get better? Should I be getting a second opinion? Where do we go from here? What antibiotic do I want to try? These are the times my Mommy Bev walks me through each step with patience and wisdom. My parents and I are so enmeshed in the situation (and clueless about Lyme on so many levels) that, for me, having Mommy Bev is a lifeline.
What I think that I want is to try a different antibiotic, called bicillin, in the form of shots. It's a bit more aggressive, but not as aggressive as IV antibiotics. I am feeling that if I don't try something different, I will always wonder, "What if I had tried such and such? Would I have gotten better faster?" I am so committed to getting better and fighting this...but sometimes it feels like fighting one heck of a riptide. Should I just let go and see where it takes me? See where I end up on the shore? Am I pushing too hard against the Lyme or not hard enough? As you can see, the last few months have left me feeling shaky and scared on the medical front. Finding the balance between letting go and pushing back is a difficult one--and patience, as always, is the most important thing to try to maintain.
Rewind:
I am now back on the baseline summer/September dose while I wait (patiently, of course. Ha!) for the doctors to coordinate things.
Pause. Wait for a transition. Choose the next road.
So, where does this leave me? Waiting.
I have backed off of the mino in hopes that I will at lest be a wee bit less sick than I have been.
I have emailed extensively with Dr. ANS and we are also planning to have a phone consult. I have also written a letter to Dr. Lyme and Dr. PCP. Dr. ANS is planning on consulting with Dr. Lyme. Hopefully, all of these actions and acts of coordination of care will result in a decision about where we go from here. There are many options to weigh. No answer is easy. And no choice guarantees anything. We have a lot to decide and discuss.
I have a deep trust in Dr. ANS that I do not have in any other doctor. I feel better simply having him 'working on things' from his end and not trying to figure it all out on my own. At this point, I do not have the knowledge to make the best decision for my care, so I am letting go and waiting to see where he thinks we should go from here. I have a sense of relief in knowing that I'm not in this alone. I wish I could contribute a million dollars to this doctor's research funds! He's that amazing.
I will not go into the details here, as I have written enough. But when I do have a sense of where we go from here, I will be better about trying to keep you up to date!
My first visitors of 2008 arrive this upcoming weekend. Carrie and Britt will be here for a three night visit. I need the emotional and spiritual lift of this visit more than anything right now. So, I am praying that I will not be too sick to enjoy at least a good part of it. Carrie is six months prego and this will be our last all girls weekend before the baby arrives. I've only met Britt once before for about 10 whole minutes, so I want to be able to get to know her and enjoy her fantastic cooking. She is planning to be head chef and Carrie will be sous-chef! How lucky am I??? We are going to be bums and hang out in our PJs I hope! :) I really LOVE 'good pajama days'--the kind you CHOOSE to stay in your PJs--not the kind when you are forced to out of feeling to crappy.
I thank all of you for your continued support and understanding while I try to find my way again. Trying to find my way emotionally, spiritually, and medically is taking all of the energy I can muster. I apologize for all of the unanswered emails in my inbox. Each message is treasured, even if it is not answered in writing. Right now, I am using my blog as my primary method of reaching out and connnecting with others. You're support of my latest blogs has been quite remarkable!
Blessings,
Emily
Saturday, March 01, 2008
Weekend Lyrics: The Awakening: What Happens Tomorrow
The Awakening: What Happens Tomorrow
Written and Performed by Melissa Etheridge
I believe if I look hard enough I will see
That there can be enough
I believe I can think clear enough
To conceive
A place where there's enough...
If not now, tomorrow
What Happens tomorrow...
I believe a woman can work hard and succeed
And we could be content
To believe that she could be in charge
Of the free
And be the president...
If not now, when
If not today then
What happens tomorrow
What happens tomorrow
If you become the change
You want to see
You change
What happens tomorrow
What happens tomorrow...
I believe that we are waking up from the spell
That those that profit from the fear
Cast so well
And good people of the earth now can tell
There is no us and them...
If not now, when
If not today then
What happens tomorrow
What happens tomorrow...
All is love
All is choice
Everyone and every voice
All of life that you see
All are possibilities
As above so below
To wed the sense into the soul
This is truth
I believe
I believe
I believe...
Truth is of the people
By the people
For the people
Why I chose these Lyrics: Most of you know I'm a democrat. You know I'm liberal fiscally and socially. However, my readers have a diverse range of political beliefs, and I debated a long time whether or not to post how I really feel about this election. I've been watching my friend, Tess, write openly on her blog about her passion for Barack Obama. I've admired her for doing so. I hope you'll hear me out. However, the glory of the computer is something called the 'delete' button and you are welcome to press that at any time.
The other night I popped The Awakening into my CD player. When this song came on, I knew it was this weekend's lyrics. I knew that I would state the following (Marla, hon, please take a slow deep breath, exhale, and then eat a few M & M's):
I am passionate about Hillary Clinton for president.
Why? That is worthy of an entire blog entry, which I still intend to write. But for now, as we approach the March 4Th primaries I want to state what I believe.
I love politics. Dad is a political junkie. Mom loves politics. And during these past few months, one of my favorite passions (and distractions from being sick) is politics. I feel so incredibly invested in this election on a deep personal level I have never experienced before. I have never felt so strongly that a particular candidate has the opportunity to change my life and this country dramatically for the better.
While I chose this particular song in light of the political climate we are in right now, no song on this album disappoints. I received Melissa Etheridge's album, The Awakening, as a holiday gift. It has been consistently praised by critics, and rightly so, as on of the best albums of 2007. I have always liked Melissa Etheridge, but her music tended to be a little more rock than I prefer. This album is much more mellow and lyric focused, with more emphasis on acoustic guitar rather than electric guitar.
The album is the result of Etheridge's own personal soul-searching after her bout with breast cancer. She has created a concept album, meant to be listened to from start to finish without interruption. She has, I believe, succeeded in powerfully speaking from her heart and boldly speaking about her spirituality, political views, and sexuality. Etheridge wrote all of her own lyrics--and I am always easily seduced by singer-songwriters who write from their souls.
She writes of the album:
This album is my story, my journey, and my hope is that it will ring universally.
There are many political and spiritual statements made in this project. I in no way wish to judge, but to shine a light on our collective feelings about the state of our politics, our religion , and our sexuality. I came to my own understanding of God, what God is, and where God is. Consequently, I feel that if we have any kind of belief in our reality and earth, we have to know that the time is now to become the change.
We are the ones keeping this paradigm of fear in place, and it is up to us to shift it if we wish. That shift and change will materialize through our thoughts and intentions.
Written and Performed by Melissa Etheridge
I believe if I look hard enough I will see
That there can be enough
I believe I can think clear enough
To conceive
A place where there's enough...
If not now, tomorrow
What Happens tomorrow...
I believe a woman can work hard and succeed
And we could be content
To believe that she could be in charge
Of the free
And be the president...
If not now, when
If not today then
What happens tomorrow
What happens tomorrow
If you become the change
You want to see
You change
What happens tomorrow
What happens tomorrow...
I believe that we are waking up from the spell
That those that profit from the fear
Cast so well
And good people of the earth now can tell
There is no us and them...
If not now, when
If not today then
What happens tomorrow
What happens tomorrow...
All is love
All is choice
Everyone and every voice
All of life that you see
All are possibilities
As above so below
To wed the sense into the soul
This is truth
I believe
I believe
I believe...
Truth is of the people
By the people
For the people
Why I chose these Lyrics: Most of you know I'm a democrat. You know I'm liberal fiscally and socially. However, my readers have a diverse range of political beliefs, and I debated a long time whether or not to post how I really feel about this election. I've been watching my friend, Tess, write openly on her blog about her passion for Barack Obama. I've admired her for doing so. I hope you'll hear me out. However, the glory of the computer is something called the 'delete' button and you are welcome to press that at any time.
The other night I popped The Awakening into my CD player. When this song came on, I knew it was this weekend's lyrics. I knew that I would state the following (Marla, hon, please take a slow deep breath, exhale, and then eat a few M & M's):
I am passionate about Hillary Clinton for president.
Why? That is worthy of an entire blog entry, which I still intend to write. But for now, as we approach the March 4Th primaries I want to state what I believe.
I love politics. Dad is a political junkie. Mom loves politics. And during these past few months, one of my favorite passions (and distractions from being sick) is politics. I feel so incredibly invested in this election on a deep personal level I have never experienced before. I have never felt so strongly that a particular candidate has the opportunity to change my life and this country dramatically for the better.
This song also brings up some food for thought specifically about having a woman for president:
Why, in our 200 year history, have we never had a woman lead our country? Almost all other industrialized nations in the world have already had women leaders. Why not us? And, if not now, when?
There is no other woman on the political horizon who is expected to run for president any time in the foreseeable future. Hillary Clinton is our opportunity to see a woman president in our lifetime, and especially the lifetime of our mothers.
Have we as younger women (who are the women most likely to vote for Obama over Clinton) forgotten what our mother's generation did for us? Have we forgotten that we have all of the opportunities we have today because THEY fought for US? Hillary is someone who has lived this change her whole life. I'm not sure how she became to many, especially in comparison to Obama, the antithesis of change, hope and inspiration? She is here to possibly break the greatest glass ceiling a woman can break. How is this not change, hope, and inspiration? I have heard my mom's stories of pursuing a PhD and trying to succeed in a 'man's world' and they are horrific. I think many of us would have given up a long time ago facing the obstacles she did.
Have we forgotten that 50% of our population is women? How a woman thinks, leads, approaches and solves problems is profoundly and fundamentally different than a man and in that case, any president in our history.
She will be the first president, I believe, to remember the value of families, women, and children. Our care for women, children and families in the form of family leave, maternity leave, childcare, work-family issues, healthcare and education have been sorely neglected. As a working woman, a wife, and a mother, Clinton will bring a much needed perspective to our presidency.
If I'm ever blessed enough to be a mother, and if that child is a little girl, I want her to know that she can be anything, including president of the United States of America.
I am not voting for Hillary Clinton simply because she is a woman. I am voting for her because I believe that she is the most competent and qualified candidate. I believe in universal health care. I believe in what she believes in. And I believe that she is the person who can truly, truly 'hit the ground running on Day One.' Why? Because she's been fighting and training for this her whole life and she's proven to me that she can 'get the job done'.
While I chose this particular song in light of the political climate we are in right now, no song on this album disappoints. I received Melissa Etheridge's album, The Awakening, as a holiday gift. It has been consistently praised by critics, and rightly so, as on of the best albums of 2007. I have always liked Melissa Etheridge, but her music tended to be a little more rock than I prefer. This album is much more mellow and lyric focused, with more emphasis on acoustic guitar rather than electric guitar.
The album is the result of Etheridge's own personal soul-searching after her bout with breast cancer. She has created a concept album, meant to be listened to from start to finish without interruption. She has, I believe, succeeded in powerfully speaking from her heart and boldly speaking about her spirituality, political views, and sexuality. Etheridge wrote all of her own lyrics--and I am always easily seduced by singer-songwriters who write from their souls.
She writes of the album:
This album is my story, my journey, and my hope is that it will ring universally.
There are many political and spiritual statements made in this project. I in no way wish to judge, but to shine a light on our collective feelings about the state of our politics, our religion , and our sexuality. I came to my own understanding of God, what God is, and where God is. Consequently, I feel that if we have any kind of belief in our reality and earth, we have to know that the time is now to become the change.
We are the ones keeping this paradigm of fear in place, and it is up to us to shift it if we wish. That shift and change will materialize through our thoughts and intentions.
So, I have taken my cue from Melissa Etheridge to say: This is what I believe. I also think her words are important because she states that she is NOT standing in judgement of others. As an American, I am stating what I believe, and you can state what you believe. And folks like Marla and I? We'll have fun battling it out politically in our back and forth emails. But in the end we love each other, not for our political selves, but for our inner beings. (Can you tell Marla and I like to go at it and tease each other a lot? I'm picking on her in this blog because she can dish it out and she can take it too! :))
The comment section is open for your views! :) Believe me, I know that 80% of my readers disagree with me on this issue! :)
Blessings,
Emily
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