Birthday Blog: Turning 35

I am definitely late in getting a birthday post up, but it is still October as I start writing this. It is still 10/10 (which won't happen for another 100 years!).


Okay, so last year at this time I had a fantasy image of feeling fantastic after a year of Rocephin. In that image I felt much-improved health-wise and had a heck of a celebration of life and new beginnings at 35. Obviously, the significant improvements in health we had hoped for didn't happen.


Still, we all figured out a way to celebrate turning 35, and I ended up having a really special and beautiful birthday. We spread out the celebrating so that I could enjoy it and not crash too hard. Stopping the Rocephin before my birthday was definitely a good decision. Otherwise, I would have been too sick to do any of the things we did and I think I would have taken turning 35 very hard.

I spent one afternoon opening and enjoying birthday mail, one afternoon taking a couple of calls from friends, one afternoon going to the arboretum in town for the first time, one afternoon having a 'Princess Party' with Jeannine and Mom, and one afternoon having lunch with Dad and Abbie. I was so grateful my body cooperated the way it did! I was absolutely determined to carve out some time to celebrate even with the stress of the flood, etc.


I was surprised in the end how calm I was about turning 35. I thought I would be very focused on the losses I grieve, especially marriage and children. Instead, I found myself able to focus on the gift of being alive, of having new options health-wise, and of being incredibly loved and blessed in so many ways. 


I focused on the abundance of LOVE in my life, and it was a beautiful birthday. Thank you to all of you who called, sent cards, gifts, and wishes!


Blessings,


Emily

Photo: Pumpkin Spice cupcakes (gluten-free, dairy free of course!). It was very hard for me to stray from my traditional vanilla cupcakes with chocolate frosting, but these were worth it!; opening presents with Dad and Abbie (doesn't that look like Asher on the bag?!)...sadly we have no photos of us together.

Happy Halloween!

Note: this post was supposed to go out yesterday, and the Birthday Blog today. Oops.

Thursday evening was one of the most fun Trick or Treat nights we have had in a very long time. Our neighborhood is filled with lots of wonderful children right now. 


What made it so fun was that I was feeling well enough to enjoy the many visitors who came into the house to visit with me while I stayed in my recliner (a nice surprise after having spent Wednesday completely crashed out in bed). I know what a big deal it is for little ones to take a break from heading to the next house for more treats!


Above, is neighbor Hunter and a huge group of his friends dressed as Christmas carolers. They sang a very well-rehearsed carol! 


I even dressed up a little bit. I wore my Princess mask that I made at my birthday party, pink pajamas, and spray-painted my hair fluorescent pink! 

After getting the Rolls last summer, Mom and I started taking regular evening StRolls around the neighborhood.  I finally started to get to know the many neighbors who I had been unable to meet and talk to previously. During Trick or Treat night this past week, I realized how many of the children and families I had gotten to know because of getting The Rolls. 


I just felt so blessed that so many folks stopped in to say hi and show off their costumes!


Hope you're having a Happy Halloween!


Blessings,


Emily


Photos:  Hunter and his friends singing a Christmas carol (I so could not get a photo that wasn't blurry); me and my princess mask, pink pjs, and pink hair. 

The New Doctor Report: The Forest and Not Just the Trees

During the last several months, I've been searching for a new care team and new ways of looking at my illness.  When I started the Rocephin, I embarked on a journey that I chose as the best possible treatment for me at that time. However, as the year progressed and I found that I wasn't progressing, I began to want something different. What I didn't know. 


I began to feel too fragmented managing so many different specialists. Each of them looked at one little piece of the puzzle, but no one other than Dr. ANS was trying to put the entire puzzle together. When I decided to stop the Rocephin, I had reached a breaking point. I felt that I couldn't go through any more days feeling that awful with no breaks. I was emotionally and spiritually breaking down. 


I felt lost in the system for the first time in a long time. No one was seeing my whole being. No one was tuning into how thin my 'mental toughness' was wearing. I also had a constant feeling that we were 'missing something'.


Now, a year after starting the Rocephin, I'm readying to take a new approach to my illness, to take a new leap of faith, and to make the next best possible decision I can make with the information I have available. Because really, that's the best anyone can do. Am I disappointed in my lack of improvement on the Rocephin? Yes. Big time.

Last week, Dad and I travelled to see a new doctor who specializes in complex chronic illness, as well as misdiagnosed and undiagnosed conditions.   Um, this would be me?  His approach is a holistic one. Patients are more than their illness. Quality of life during treatment matters. The doctor works with several nurse practitioners as a team. He uses a variety of methods from traditional medications to homeopathy to meditation to nutrition (I'm very excited about this part) to encourage the body to heal.


To prepare for the appointment, I spent several weeks assembling ALL of my medical records from the past twelve years! In addition I had to fill out a 15 page assessment form. This is the most thorough and detailed review anyone has ever done of my condition. Apparently my medical records were more than 1000 pages, which was close to being one of the biggest files they had ever received. Yikes.


Before I arrived for the appointment, the medical team met to discuss my case, review pertinent medical records, and think about possible diagnoses. Originally, I was scheduled to meet with one of the nurse practitioners, but because my case was so complex, I actually met with the doctor. Even the doctor teased that he wondered how I had been accepted as a patient because I was SO complex.

I've searched endlessly for a new doctor to look at my case, but it is way more difficult than it sounds like it might be! This new doctor works closely with Dr. ANS, so this is how I found him. Since Dr. ANS has been and continues to be my point guard and most trusted health-care provider, I was excited about this new doctor. Once I had an appointment with this new doctor I felt like I was finally moving forward. 

What shall I call this new doctor? Dr. Complex? Not because he is complex, but because he focuses on solving complex puzzles like mine!

Dr. Complex spent two and half hours with me. After that two and half hours I felt that he had a better understanding of my whole being and all of my symptoms than any doctor other than Dr. ANS ever has. He was able to incorporate all of my symptoms into his diagnosis, some of which no one has ever acknowledged before!

Dr. Complex still feels that this is Lyme disease, but more broadly defines it as a vector-borne illness. Likely I have many other things going one besides Lyme, including Bartonella and Babesia which are other tick-borne/vector-borne illnesses. No other alternative diagnoses came up in the pre-appointment meeting or after meeting with me. 

I think there was a part of me that hoped the diagnosis wouldn't be Lyme disease. That there would be something more easily 'fixed' or 'cured'. 

During the antibiotic treatment, I've been concerned about the effects it had on the rest of my body. Part of the reason I stopped the Rocephin was that I felt my body couldn't take the assault any longer.

The first step in treatment with Dr. Complex will be focusing on all of the collateral damage from so many antibiotics. We will first focus on repairing my immune system and gut, helping with detox, lymph drainage, allergies and other areas. We need to prepare my body to eventually (and hopefully soon), continue on antibiotics to treat the infections themselves.

Dr. Complex has started me on several supplements (one at a time, so that I know I am tolerating them), in addition to homeopathy.

As we begin this new journey, only time will tell if this approach is a good fit for me. Dr. Complex felt that I was an extremely complex case (which is still very hard to hear). "You're a very interesting case medically," he said, "But I'm sure you'd like to be interesting in a different way." He can't make me any promises. And if he did, I'd think he was full of hot air anyways.

What I like the most and what I've long been searching for is another doctor, beyond Dr. ANS, who can see the forest instead of just the trees. And Dr. Complex certainly does this.

The office is very structured, organized, and team-focused.  The follow-up care even includes filling out a form before each visit, documenting your symptoms, response to treatments, etc. that is then discussed at the team meeting before your appointment.

I left with a very detailed, direct, and focused starting plan, including tests that I needed done and clear directions and descriptions of the treatments we are starting with.  This is a big change from the way things have been previously, where I've often been left with a lot of information to sort through on my own and make my own decisions. It's great for me to be involved in my care, but not so great when I don't have adequate help making the decisions!

My biggest stuck point is supplements. They definitely make me nervous. That is the part I am processing right now. However, what I have done to my body already is probably no less risky than these supplements. I know that Dr. ANS would never endanger my health or refer me to a doctor he did not trust. 

If I can trust and let go, I think that I have truly found two doctors who will hold me in the palm of their hands, do the best to get me better, continue to look at the forest and not just the trees, and artfully guide and direct my treatment. 

I would really like to write another post about the appointment answering questions such as: why am I such a difficult case to treat? Why does Dr. Complex continue to believe this is a vector-borne illness? What exactly does he mean by vector-borne illness? Why is this illness so different in each person? What kinds of supplements am I taking?

When I am writing my posts I am usually wondering what questions my readers would ask. So, I'd like to know your questions about my treatment, my diagnoses, etc. to use in that post!! Ask away!

Blessings,

Emily

Photos:  The purple beauty flower at the arboretum. (I think that is what it is called.) I took these photos for you Rachel!

A Crazy Month!

We have had a crazy month since I stopped the Rocephin! While the leaves were changing, the mums were blooming, and the pumpkins popping up everywhere, we ended up missing out on a lot of the ways we love to enjoy Fall.


The very abbreviated version of the last month:


1. I stopped the Rocephin.
2. Our basement flooded. Oh, the mess.
3. I turned 35. (And we did squeeze in some fun!)
4. Mom severely aggravated her spinal stenosis while working on the mess in the basement. She's been in a lot of pain (which is much improved with the prednisone). We make quite a pair with two people who can't function!
5. Dad and I travelled to see a new doctor last week.
6. I got a Red Rolls (an electric Jazzy wheelchair). 


Whew. It has been quite a month, with absolutely no down time to process. I do not do well with having no 'down time', days without appointments, or people in and out of the house. I realize that this is 'normal life', but my body gets overloaded easily.  Given the level of stress we've had, it is nearly impossible for me to evaluate how my body is doing post-Rocephin!


Really, I am over my days of being a drama queen and this is way to much drama! I feel like we have just had one thing after another and we need a break!


Last night I simply prayed for the time, energy and focus to blog and process the past month!


I hope to send out posts over the next couple of weeks on these topics, starting first with the doctor's appointment because it is what is most fresh on my mind.


And as I alway say, but I don't think I can ever fully say it often or well enough, thank you thank you thank you for your love, patience, thoughts, prayers, support, emails, and the joy you bring to my life!


Blessings,


Emily

Photo: Pumpkins and mums at the arboretum. My one big outing this month!

The Emotional Flood

I had no idea the level of emotional and physical stress the flooded basement would put on all of us.


The hardest part for me has been that I did not have the physical or emotional energy to deal with this level of additional stress. I was so worn down after the rocephin, I desperately needed some space. On top of the commotion, disruption, and questions of how much work we will need to do on our house, we have had to face the emotional side of losing and throwing away our 'stuff'.


I admit it, I'm a sentimental pack rat. A really bad one. But right now, bringing up the last 35 years of my life and throwing stuff away wasn't quite what I needed. I am not ready or in a good place to do it.


It is very difficult to explain the 'level of tired' I'm feeling after this past year. Not necessarily in a sad way, just in a "Whew, that was one very exhausting journey and I need a break" kind of way. I'm trying to roll with the punches that life gives us, but I haven't been doing very well with that!

One afternoon, I went out in the garage with Mom. I sat on a stool while she showed me what we had lost. We pitched all of our cassette tapes. Hundreds of them. Literally. I also pitched almost all of my mix tapes. That was very difficult for me, as they are filled with beautiful memories. In a different setting and a different time, this would have felt easy and good to do. Even as I type this I'm embarrassed that, in the grand scheme of things, I feel sad about losing cassette tapes!


Mom lost a lot of her things from her days as a professor. She wasn't quite ready to let go of these things yet, but she didn't have a choice either.


When I came inside, I collapsed into bed from the physical and emotional exhaustion of it all.




I know it is just stuff. I know we are never going to listen to cassette tapes again!  I have enough humor and perspective about the situation to realize that we really did not lose that much, we are very fortunate, we don't need this stuff, what we did lose is not a big deal, and that we really did need to clean out this crap anyways.  


But right now, it is like looking at my whole life spread out in front of me in a quite unpleasant and chaotic way. It is about remembering when life was good. As my very wise best friend Jeannine says, I look at the past and wonder if that was the best life will ever be because things have been so hard the last 12 years. I keep my hope that things are going to improve, that life is going to be better, but it is hard to face the past right now. It's not that I don't do my best to live the best life I can right NOW, but I long for better days.

Speaking of Jeannine, here is a photo of a caricature of the two of us at our prom in 1994, during those better days of which I speak. This too, was soaked in the flood. I decided to take a photo journal of things we had lost. This way, I have the memories without taking up the space in the house.


In so many ways I want to let go of the past and pitch stuff. So there is a mixed blessing in all of this. It just kind of sucks right now!


For a very long time, I have felt weighed down by the past and all of the stuff that has accumulated over the years. Even though most of the 'stuff' is out of sight, I feel as if it is taking away precious energy. I have very much wanted to let go, move on, and create new memories. I struggle to find good memories in the past 12 years compared to the fun and joy before I got sick. So it keeps me holding on to the past.


Cleaning and staying organized are continuously put on the back burner because I just don't have the physical or emotional energy for it. We seem to move from one health crisis to another. In between, we find it difficult to tackle another big project. If the energy was present, a lot of 'stuff' would be very easy to throw away. Much of it was just shoved in a basket or a Rubbermaid container 'to do later' when I was 'feeling better'. It is so incredibly frustrating to have a body that doesn't cooperate with what I know I need to do for my emotional well-being.


I desperately want to be able to separate the chaff from the grain. I want to be able to find the things I'm looking for when I want them. I want the most precious things preserved, and the rest discarded. I've read enough about organizing to know that you're supposed to spend 10 minutes a day, or work on this space, or tackle this first, but when you have NO physical stamina or energy and reading through papers is a challenge, these aren't realistic ways to approach organizing, which is part of what makes this process so frustrating. And when I do have moments of precious energy, I don't want to use it to sort through a bunch of crap. 


I want to be all Zen about this, live in the present, and not hold onto the past. But for me, it's a tough balancing act. How do we preserve memories of the past, especially of those really good years without holding ourselves back? Do we keep them only as memories, and not as 'things'? I know, especially amongst some of my other chronically ill friends, I am not alone in this struggle. Our lives look nothing like we had hoped they might, and even with great efforts at acceptance, we miss being healthy and the things we were able to do.  


My friend, Rachel, and I have discussed this topic a great deal. As she says: How do we find the balance between being realistic and staying hopeful? How do we make sure we are not living in denial about what we might still use? This is what I faced when parting with my bike and my saxophone. It is what I face now with my Shel Silverstein books or other items I thought I might save for my own children. How do we balance the sentimental and the practical?


This isn't to say that I haven't kept plenty of 'stuff' from the past twelve years, particularly in the form of letters, cards and photos--the ones that have lifted me up and sustained me over the years.


I wanted to start 35 out lighter and with a different mindset, so I guess this was one big kick in the pants to do so! The timing of this flood was definitely significant, but I did tell God that I wasn't amused! I will always have the memories, even when the 'stuff' is gone. Eventually it won't hurt so much. Eventually the flood of 2010 will be just a blip on the radar.


If anyone has tips on how to let go of 'stuff', how to decide what to keep and what to toss, and how to find ways to keep the sentimental stuff that you do keep organized, I welcome them.


The journey to clean out our basement and face the past 35 years has only begun! I don't look forward to using my energy to sort through a bunch of 'stuff', but I have known for a very long time that doing this and throwing much of it away is crucial for me to move forward, whatever life may bring. I want to live more fully in the present, and not be weighed down by the past. I want to use my precious energy for the things that matter most to me in this life. Oh, but first to sort through all of that STUFF!




Blessings from a sentimental pack rat,




Emily


Note: I have been working on this post for several days now and am feeling much calmer. We are still very overwhelmed by the potential work on the house to be done, and I am still overwhelmed about HOW I am going to tackle my 'stuff' so that I can move forward, but things are settling down a bit!


Photos: Hundreds of cassette tapes from my growing up; My beloved mix tapes; Caricature of me and Jeannine at prom.

Miss Rebekah and Mr. Serious

Rebekah and I work so hard to try to schedule monthly visits, but somehow I feel like something always 'comes up'--I'm too sick, Kale gets sick, or a flooded basement?! Rebekah and Mr. Serious visited last Friday despite the craziness of the flooded basement.


Unfortunately I was just too stressed and sick to be much of a visitor or friend...but I did snap a couple of good photos of these two people who bless me so much. Rebekah also provided us with some wonderful soup for our dinner. Thanks for hanging in there with me Rebekah.

I love this photo of Mr. Serious. He is really into his belly button right now! :) He is also very proud of himself for being able to get up on the recliner by himself.


Blessings,


Emily

Photos: Rebekah and Kale; Kale shows off his belly button.

Flooded

After I stopped the rocephin and had my port de-accessed last Tuesday, I felt calm, relieved and was very much looking forward to some time to recuperate emotionally and physically from the trials of the past year. We all were. Mom, Dad, me, and probably even Asher who has had to work very, very hard this year to protect and care for me! :)


On Thursday afternoon Mom arrived home from work to discover that our basement had flooded. This has happened before but this was particularly bad. The basement is Mom's living space--her bedroom, her office, and her comfy chair. It is also home to 35 years of STUFF--some of it worth keeping and a lot of it just crap that has piled up over the years. I'm a sentimental packrat. This does not help things! We've also shoved a lot of stuff into the basement over the years since I got sick hoping to 'get to it soon', but constantly being derailed by my health problems. 


Above is a photo of what friends and family carried up from the basement, most of which will go out to the trash tomorrow. 


We have many thanks to give to those who came to our 'rescue'. To all of you who gave us your time, energy, muscle power, advice, food, fans, emotional support and everything else, we are incredibly grateful. 


Right now Mom is hanging out in my den on the pull-out sofa while trying to get the basement back into some semblance of order. The continuous wet weather has not been conducive to getting the basement habitable again. It is still drying and smells musty, but we did have it cleaned and sprayed with anti-fungal and anti-bacterial 'stuff' (which stinks!). We are also trying to find the source of the flooding so that we can have the landscaping or structural issues resolved before another flood occurs. 


This has been very stressful and has certainly derailed both myself and my mom. We are both stressed for different reasons and in different ways. I have been struggling a great deal with feeling helpless and guilty for not being able to help. I don't do well with commotion and chaos, or a lot of noise and disruptions, which are par for the course in this sort of situation. The stress of the situation has been making me sick. I also hate seeing my mom so overwhelmed.


So, I've been a bit MIA lately and this is why!


Again, thank you to everyone who has chipped in to help us in a myriad of ways--with physical help, food, resources to use, etc. Our next step is some much needed, but not welcomed, home repair!


Blessings,


Emily

Photo:  Lots of stuff from the basement. Oh my!