Well, the emails and phone messages keep coming in with the questions:
How are the shots going? How are you feeling? Are you herxing? Can you tell if they are helping?
I figure it's about time I get to it and answer these questions on my blog--as typing the same answers out individually probably won't happen in this millennium!
The last time I posted about the bicillin was after my first shot, at which point I wasn't herxing at all and wasn't sure what this meant.
As always, I got a little too excited a little too soon!
Let me just say that this is some seriously strong stuff! Here's the scoop...
After the second shot I did herx, and have herxed after each shot since then. Each time, the herxes got worse as the medication built up in my system. A couple of times, I herxed almost immediately--within just a few hours of getting the injection I begin to feel sick. Otherwise, it hit the next day.
After one of the shots, I woke up at noon, got up to pee, opened the shade in my bedroom and turned off my white noise machine. I said to Mom, "I don't feel very well. I'm just going to lie down for a few more minutes before I try to get up." The next thing we knew it was 3:00 in the afternoon! Oops!
This has pretty much been my pattern since the herxes started. The first two days after the shot, I pretty much sleep all of the time. I'm so exhausted and miserable. Mom's been quite accommodating to me eating meals at all hours of the day! Lunch at 3? Okay, ring me on my cell phone if I'm not home.
The blessing is that, for the most part, I am sleeping after the injections. Today, though, I feel miserable but haven't been able to get the sleep. I would much prefer being able to sleep through it than lie around complaining and whining about how lousy I feel and not being able to find anything to distract myself--which is how today has turned out.
Another blessing is that I usually get a break between the shots when I feel a touch of 'Spring' and feel like I can get ready for the next round.
On Tuesday of this week, I received dose number 6. Yup, I'm counting. We started with 1/4 of a dose (300,000 units out of 1.2 million units). This week we did 1 1/2 times that amount at a dosage of 450,000 units. (Don't ask me who came up with 1.2 million units for a dose instead of something a little simpler!)
I do have a sense that the shots are working because my 'good days' are better than they used to be.
I chose to increase my dose this week because after dose number 5 I did not herx as badly, which I felt was a sign that I was ready for more medication. I found this encouraging, since I was never able to increase the minocycline so soon or successfully.
Unfortunately, it's Friday night and I'm feeling worse today than I did earlier in the week--which is different from my previous pattern. I'm really hoping that I'll turn the corner tomorrow and be able to visit with some 6 week old puppies on Sunday. That's my 'dose of joy' that I'm hoping to get in before I start another week of herxing.
Blessings,
Emily
P.S. How do I educate spellcheck on the words herx, herxing and herxed? :)
Friday, May 30, 2008
Sunday, May 25, 2008
Seeking Joy
Somewhere along the way in the past couple of years I forgot to make time for joy. I forgot what it meant to have fun.
Or perhaps, it isn't so much that I forgot how, but I couldn't figure out how to do it within the restraints of feeling so, so sick all of the time.
When Davidson made it to the NCAA tournament in March and then all the way to the Elite Eight, something ignited inside me. I was going to watch those games, cheer my heart out and pay whatever price I had to pay afterwards. Every game made me sicker, every game had a consequence, but every game reminded me that joy and fun were possible.
Ever since then, I've been making a concerted effort to make time for and to seek out joy in my life. Maybe it sounds strange, especially to those of you who know me as someone who is usually fairly upbeat, positive, cheerful, etc. to imagine that I wasn't actually experiencing joy much.
Since many of my blogs can be a bit sad or down-hearted, I wanted to share the joy I have experienced. In between each of my shots, I am sometimes getting little 'breaks' when I feel 'better' (better is a relative term here!).
This weekend the cold, rainy days finally turned to perfect, gorgeous weather. Everything is green, everything is blooming, the sun is shining.
Our neighbors have lived across the street from us ever since we moved here--I grew up playing with their children, running back and forth between their house and ours. Their daughter, Carrie, and I have always been friends but rarely get to see each other.
Two weeks ago, I was able to stop over at our neighbor's house to see Carrie and her six week old baby, Claire. This was the first time I knew something was changing with the Lyme treatment because I sat upright, holding a baby! Plus, I was at someone else's house other than my own. Also, for me, a being with children and babies is tops on my list of 'best things in life.' It had been about 5 years since I last held a newborn--another neighbor's child.
On Saturday, I spotted Carrie over at her parent's house again and headed on over to see her and Claire. When I arrived Claire was asleep. When she awoke, they let me be the one to pick her up, soothe her, give her a bottle, burp her and hold her as she slept in my arms. All the while, I got to catch up with Carrie and her mom, Brenda.
Admittedly, I'm a little out of practice with feeding, burping, and holding newborn babies! Still, with a little guidance to get me back into the swing of things, I got it down okay.
Perfection. That's all I can say about holding a sleeping baby in my arms. Finally, I had exhausted my upright time and had to reluctantly turn Claire over to Carrie.
It was way past my nap time, I had actually lost track of time when I was over there (which I never do), and I wasn't having extreme autonomic symptoms.
Yes, last night I paid a price. I was sick, tired, and needed to take extra medication to deal with the added nausea and agitated autonomic nervous system.
Still, I did sleep last night, only to wake up and have another 'good day' today. How often does that happen?
So, I soaked it in again. I did have a counseling session with my therapist (who comes to my house every few weeks), but it was a good one. She reminded me to keep seeking out joy, to keep making these activities that nourish me my number one priority.
And, while normally this would be the only thing I would do in a single day, I instead had energy to sit on the patio outside in the glorious weather wearing an all new outfit just purchased by Mom on her shopping extravaganza (well, not quite an extravaganza, but I needed clothes that fit!).
I threw the ring to Asher, watching him frolic and play, stop for a drink of water and trying to decide whether to bring the ring to me or to Mom. I ate watermelon out on the patio. I went for a walk with Mom after dinner to the 'bush' that is my new milestone in walking distance. (Next time I'm going to remember to take my pedometer with me!)
One day when I made it to this location, I sat in the grass with Anne and waited for Miss Alexandra to arrive and meet me there on her way home from school. When she spotted me, she hollered: "Miss Emily! Miss Emily! Look how far you walked today!" This little girl has the most gentle spirit for a 9-year old child. She's so incredibly perceptive, caring, and loving--always wanting to know how Miss Emily is feeling, or feeling sad that Miss Emily is sick.
I want to write this post because I want to remember that I can have these moments. I want to remember what my Mommy Bev told me. She told me that each of these moments is like a little bit of Spring. She told me that we often have long periods of Winter with this illness, but we do get moments of Spring.
And someday, she believes, it will be Spring every day.
I have to believe this to keep going, to keep facing the treatment.
I just finished listening to the book Kira-Kira in which a young girl dies of lymphoma. (I highly recommend this well-written, Newberry award winning book.) Her sister, Katie, realizes that Lynn wanted to keep living, even through all of her suffering because she still wanted those little moments when she could eat something, watch the sky, or be read to.
That part of the book really spoke to me because that is why I keep fighting. The moments that are life here on earth are worth fighting for. The trick for me is to literally seize the moment, however fleeting it is, that I feel well enough to physically and emotionally experience joy. I have to consciously let whatever else is on my to-do list fall off of my radar screen and soak up the joy because I never know how long a 'good' moment will last or when the next one will come. (My next step in therapy is to get past feeling guilty, lazy or selfish for following my joyful heart first over other things!)
I'm still sad that joy always has a physical consequence for me. I'm sad that when the physical storm hits so does an emtional one--sadness, frustration and sometimes even anger.
While there shouldn't be a consequence for joy, I'm still going to keep making efforts to seek it out. That way, each week before my next bicillin shot, I'll have something to hold on to, something to remind me that things can and will get better, and that Spring will come again.
There's nothing like a new baby or a playful dog to remind us of what life is all about, and that Spring is possible.
Blessings and joy,
Emily
Or perhaps, it isn't so much that I forgot how, but I couldn't figure out how to do it within the restraints of feeling so, so sick all of the time.
When Davidson made it to the NCAA tournament in March and then all the way to the Elite Eight, something ignited inside me. I was going to watch those games, cheer my heart out and pay whatever price I had to pay afterwards. Every game made me sicker, every game had a consequence, but every game reminded me that joy and fun were possible.
Ever since then, I've been making a concerted effort to make time for and to seek out joy in my life. Maybe it sounds strange, especially to those of you who know me as someone who is usually fairly upbeat, positive, cheerful, etc. to imagine that I wasn't actually experiencing joy much.
Since many of my blogs can be a bit sad or down-hearted, I wanted to share the joy I have experienced. In between each of my shots, I am sometimes getting little 'breaks' when I feel 'better' (better is a relative term here!).
This weekend the cold, rainy days finally turned to perfect, gorgeous weather. Everything is green, everything is blooming, the sun is shining.
Our neighbors have lived across the street from us ever since we moved here--I grew up playing with their children, running back and forth between their house and ours. Their daughter, Carrie, and I have always been friends but rarely get to see each other.
Two weeks ago, I was able to stop over at our neighbor's house to see Carrie and her six week old baby, Claire. This was the first time I knew something was changing with the Lyme treatment because I sat upright, holding a baby! Plus, I was at someone else's house other than my own. Also, for me, a being with children and babies is tops on my list of 'best things in life.' It had been about 5 years since I last held a newborn--another neighbor's child.
On Saturday, I spotted Carrie over at her parent's house again and headed on over to see her and Claire. When I arrived Claire was asleep. When she awoke, they let me be the one to pick her up, soothe her, give her a bottle, burp her and hold her as she slept in my arms. All the while, I got to catch up with Carrie and her mom, Brenda.
Admittedly, I'm a little out of practice with feeding, burping, and holding newborn babies! Still, with a little guidance to get me back into the swing of things, I got it down okay.
Perfection. That's all I can say about holding a sleeping baby in my arms. Finally, I had exhausted my upright time and had to reluctantly turn Claire over to Carrie.
It was way past my nap time, I had actually lost track of time when I was over there (which I never do), and I wasn't having extreme autonomic symptoms.
Yes, last night I paid a price. I was sick, tired, and needed to take extra medication to deal with the added nausea and agitated autonomic nervous system.
Still, I did sleep last night, only to wake up and have another 'good day' today. How often does that happen?
So, I soaked it in again. I did have a counseling session with my therapist (who comes to my house every few weeks), but it was a good one. She reminded me to keep seeking out joy, to keep making these activities that nourish me my number one priority.
And, while normally this would be the only thing I would do in a single day, I instead had energy to sit on the patio outside in the glorious weather wearing an all new outfit just purchased by Mom on her shopping extravaganza (well, not quite an extravaganza, but I needed clothes that fit!).
I threw the ring to Asher, watching him frolic and play, stop for a drink of water and trying to decide whether to bring the ring to me or to Mom. I ate watermelon out on the patio. I went for a walk with Mom after dinner to the 'bush' that is my new milestone in walking distance. (Next time I'm going to remember to take my pedometer with me!)
One day when I made it to this location, I sat in the grass with Anne and waited for Miss Alexandra to arrive and meet me there on her way home from school. When she spotted me, she hollered: "Miss Emily! Miss Emily! Look how far you walked today!" This little girl has the most gentle spirit for a 9-year old child. She's so incredibly perceptive, caring, and loving--always wanting to know how Miss Emily is feeling, or feeling sad that Miss Emily is sick.
I want to write this post because I want to remember that I can have these moments. I want to remember what my Mommy Bev told me. She told me that each of these moments is like a little bit of Spring. She told me that we often have long periods of Winter with this illness, but we do get moments of Spring.
And someday, she believes, it will be Spring every day.
I have to believe this to keep going, to keep facing the treatment.
I just finished listening to the book Kira-Kira in which a young girl dies of lymphoma. (I highly recommend this well-written, Newberry award winning book.) Her sister, Katie, realizes that Lynn wanted to keep living, even through all of her suffering because she still wanted those little moments when she could eat something, watch the sky, or be read to.
That part of the book really spoke to me because that is why I keep fighting. The moments that are life here on earth are worth fighting for. The trick for me is to literally seize the moment, however fleeting it is, that I feel well enough to physically and emotionally experience joy. I have to consciously let whatever else is on my to-do list fall off of my radar screen and soak up the joy because I never know how long a 'good' moment will last or when the next one will come. (My next step in therapy is to get past feeling guilty, lazy or selfish for following my joyful heart first over other things!)
I'm still sad that joy always has a physical consequence for me. I'm sad that when the physical storm hits so does an emtional one--sadness, frustration and sometimes even anger.
While there shouldn't be a consequence for joy, I'm still going to keep making efforts to seek it out. That way, each week before my next bicillin shot, I'll have something to hold on to, something to remind me that things can and will get better, and that Spring will come again.
There's nothing like a new baby or a playful dog to remind us of what life is all about, and that Spring is possible.
Blessings and joy,
Emily
Photo: Row of Forsythia bushes blooming earlier this spring in our yard. Miss Alexandra exclaimed one day: "Oh, your forsythia bushes are really beautiful!" I don't think I knew they were even called forsythia when I was in 4th grade (or for that matter even appreciated their beauty)?!
Thursday, May 22, 2008
The Equation I Created: Hillary Means Hope
During the weeks leading up to the Pennsylvania primaries, our house was bursting with energy, excitement, joy, and life in a way we had not felt for a very long time. We had a volunteer staying with us, Mom worked tirelessly for the campaign doing everything from canvassing to being the food coordinator. We felt alive and energized in a new and exciting way.
I felt, for the first time in a long time, that I was a part of something bigger than me. Something so big and so important for the future of our world.
Hillary won big in Pennsylvania. We stayed on cloud nine for a few days. And then, suddenly we felt a sense of anomie. Where was our focus now? We had been flying on adrenaline for weeks and literally collapsed after the primaries.
Even before the Pennsylvania primaries, I found that I had come to equate electing Hillary Clinton as president with hope for myself.
What? You might be scrunching up your brows and saying: what does she mean by this?
I think I literally went silent after the primaries because I lost my sense of direction. And, now I feel like I'm losing it more. I had to write this post because what has been happening with Hillary has been directly related to what has been going on with me--and explains a great deal of my silence in blogging and emailing.
I've put off blogging about this topic because I am still holding out hope in Hillary. I know how to hold onto hope, even if it seems impossible. The last ten years of my life have been about fighting impossible odds. I'm afraid that if I even imply in a blog that this race is over, that Obama is the definitive Democratic nominee that I've in my own way done what I refuse to do: count Hillary out. And I can tell you, it's the last thing she would want me to do either.
Regardless of the outcome, I'm feeling disheartened, frustrated and even angry at the process. But that's not what this blog is about. It's not so much a blog about politics as it is about my own journey to make sense of hope and how personally I feel affected by Hillary.
Somehow, in the past few months I came to equate Hillary with hope in my own self. As hope for her has looked more and more grim, I have felt my own sense of hope flat line.
How do I explain this crazy equation I came up with?
This year is 10 years of this and ten years of that--my ten year college reunion, my ten year anniversary since graduation, my ten year anniversary of getting sick. Somehow I had to find a way to make 2008 seem like a year of possibilities rather than a year of endings and sad markers.
What I knew for sure this year was that Hillary meant hope to me. That if she was elected president my world and my future were bright along with the future of so many other people. Suddenly I had hope in America again. And, on a personal level, I had hope for my own life in a new and profound way.
Hillary's health care plan would change my life profoundly. Obama's will not. Hillary is ready to break the biggest glass ceiling a woman can break. She's going to change the lives of families, children, caregivers, and women in ways that no man ever will see clearly enough to do. She would make sure research into autism and all sorts of illnesses received its long-neglected and well-deserved funding. I believe in Hillary on all levels, but personally, I am depending on her to give us all, including myself, the health care I need and deserve, to stop living my life in fear of what Medicaid won't cover, to stop wondering what to do if I ever lost Medicaid, and to stop worrying what to do when my parents are gone to keep the government from taking any money they try to save for me.
I want Hillary to win for me and for my future. But I also want her to win for so many other reasons and for so many other people. I want her to win, too, for my mom to see that her hard work, and that of her generation has mattered and made all the difference.
When Hillary came to our town to speak and I was able to see her she spoke of people with visible and invisible disabilities. Have you ever heard a candidate say these words? Have you ever imagined that someone might say these words in a 35 minute stump speech? I never did. And in that moment I knew even more than ever before that she was the woman I wanted in the White House.
She inspires me beyond what I know how to express. The more she fights, the more I love her. The more she stands up in a man's world, the more I love her. The more I learn about her plans for America, and me, the more I love her.
I know most of my readers aren't Hillary supporters. I know some people feel disengaged and disenchanted with politics. I know some people feel it doesn't effect them.
I feel that every day of my life I'm affected by the decisions that our government has made about taking care of families, people with disabilities, the poor, women and children.
Where do I go from here? I can't turn on the news without hearing the pundits declaring it's over. I won't count Hillary out until she is out herself. I will support her taking her campaign all the way to the convention. I won't entertain thoughts of who to vote for until I know who the nominee is for sure, because on some level I still think she's going to pull this thing off.
In the meantime though, the hope isn't as bright as it was when we saw her take Pennsylvania big time. I've lost my sense of feeling like I'm a part of something bigger.
And, mostly, I'm trying to figure out how separate the equation I made--that having Hillary as president is essential to my own healing and hope.
How do I do this? How do I create a healthy balance for me and for Hillary?
Blessings,
Emily
Photo: Front page photo from our local newspaper of Hillary speaking in our town. Yes, this is the exact view we had of her!
Wednesday, May 21, 2008
Thoughts on Writing: Decreased Blog Pressure
I haven't blogged in almost a month. I miss it. Yet, I don't take the time to make it a priority.
Certainly, it's true that what Anne and Scott told me when I started the new Lyme treatment is important--taking care of getting healthy trumps making sure I blog. Hence, the term 'decreased blog pressure.'
However, I'm finding that I've let a part of me go that I don't want to let go. I forgot to strike a balance between making time to blog and making time for other things in my life. Then, the longer I go without blogging, the harder it becomes to know where to start, what topic to write about first, how to even begin sorting through all of the events of the past month. A lot has been going on in my world, both physically and emotionally. I let them trump writing, but in the end I'm bottled up and find that I put off making time for what matters to me.
Tonight at dinner I said to Mom: "I haven't blogged in so long I don't know where to start. Maybe I just need to write a blog with something to start again." She nodded emphatically in agreement.
So, here I go. Short and sweet. A start. A beginning. I hope I'll remember that decreased blog pressure is a healthy thing when kept in check. I hope I'll remember to take the pressure off when it's appropriate, and to return to what I love as much as I am able.
Here's to finding my voice again!
Blessings,
Emily
Certainly, it's true that what Anne and Scott told me when I started the new Lyme treatment is important--taking care of getting healthy trumps making sure I blog. Hence, the term 'decreased blog pressure.'
However, I'm finding that I've let a part of me go that I don't want to let go. I forgot to strike a balance between making time to blog and making time for other things in my life. Then, the longer I go without blogging, the harder it becomes to know where to start, what topic to write about first, how to even begin sorting through all of the events of the past month. A lot has been going on in my world, both physically and emotionally. I let them trump writing, but in the end I'm bottled up and find that I put off making time for what matters to me.
Tonight at dinner I said to Mom: "I haven't blogged in so long I don't know where to start. Maybe I just need to write a blog with something to start again." She nodded emphatically in agreement.
So, here I go. Short and sweet. A start. A beginning. I hope I'll remember that decreased blog pressure is a healthy thing when kept in check. I hope I'll remember to take the pressure off when it's appropriate, and to return to what I love as much as I am able.
Here's to finding my voice again!
Blessings,
Emily
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