Lyme Log: On To Step Two!

Thank you for all of your emails and Facebook notes of support. Several of you have asked how things are going, so I thought I'd check in now that Step 1 is complete.

As of Wednesday morning I've had three injections of the Rocephin, each one a higher dose than the one before.

The good news is that I have tolerated the medication thus far and have not had any major or minor allergic reactions. (Thank goodness!)

They've made sure that I get my favorite nurse (or nurses) every day. Having wonderful nurses can change the entire experience, and thankfully I've been well-taken care of.

Now we move to Step 2 (starting Thursday morning), which is to continue the IM injections for a few more days and as long as they are tolerated we will schedule me for insertion of a port.

I'll admit that perhaps I went into these injections thinking: "How painful could they really be?" But OUCH! They really hurt. I now see why the nurse feels badly giving the darned things to me and why both Dr. PCP and Dr. Lyme said that it would be difficult to tolerate the injections for more than 7-10 days.

I don't want to rush to a port at all, but I also see that the injections really are very difficult to tolerate. The best description I can think of is that it feels like a charlie horse in my toosh! The muscle pain and cramping radiates down my leg and around to my belly.

I've been icing my toosh and applying heat to my belly! I'm employing my best deep breathing techniques. And reciting the mantra "Three down, seven to go. You can do it!" I keep telling myself that if I can get through the GI attacks which last for hours on end, I can get through the 30 minutes when the pain is the worst from the Rocephin injection! Seriously though...where is the lidocaine that is supposedly in that injection?

As of now, I'm exhausted and weak from the medication. Both are symptoms I expected. I'm also having difficulty with any sitting or standing time. The increased ANS symptoms are also to be expected. Rocephin targets the Central Nervous System (CNS). So far I have not had the muscle and joint pain that I had with the bicillin injections, which targeted the muscles, joints, connective tissues and organs. I was using Zithromax to target the CNS issues, but the Rocephin will be much more aggressive at this.

I'm so thankful that so far I've at least been able to hang out in my new peaceful bedroom and at least be able to distract myself with some fluffy TV when not resting/napping. This is much preferred over those times when I am too sick to do anything but close my eyes and lie still. Hooooraaaayyy for lots of fresh new Fall TV. What are your favorite TV shows? I love this topic!

Otherwise beyond doctoring, icing and heating, meals, some TV, resting and time with the fam, I'm trying to push away the thoughts of 'shoulds' and focus on the task at hand--treatment.

I'll keep checking in as best I can! Thanks so much for your prayers and good thoughts. They continue to buoy my spirits and keep me pressing on.

Blessings,

Emily

P.S. If anyone is an expert in port types/experiences I would like to hear more. I know there are many, many types and it's a bit overwhelming!

Photos: Gerber daisies in our yard. Mom bought these in a pot for me when I moved into my new room. When they stopped thriving, she planted them in the yard. We thought they wouldn't come back, but they did! And they are still blooming! So cheery!

Lyme Log: Starting the 'Unmentionables'

When this post arrives in your inbox Monday morning, I'll be heading out shortly thereafter to start back on treatment for Lyme. Yes, it's time to start talking about the unmentionables again. I know you've missed all of that talk!

Things have been in the works preparing for the next step in treatment since my phone consult with Dr. Lyme on August 20th, so this has been a long process. I finally met with my PCP on Friday and she is 'on board' and ready to go.

One note about Dr. PCP. I'm extremely fortunate to have a PCP willing to go this road with me. Rarely will PCPs (or any doctors who don't focus on treating Lyme treat patients like me who require unconventional and highly politicized treatments). I have a really great medical team coming together to treat me and give me their best efforts to help me towards better physical well-being.

My plan was to make sure everything was in place medically-speaking and then post the details of the plan. However, as we know the best laid plans of mice and men often go awry. And instead of having the weekend to get a few things in place before treatment starts again, I had another miserable GI attack. (We still have no known cause for these and the frequency of the attacks this summer has been unsettling and discouraging.)

I'm not yet recuperated enough from my GI attack to get back to blogging fully, so I wanted to at least post a quick update to all my loved ones letting you know where I am. I have absolutely no idea what to expect from this next step in treatment, how sick the new antibiotic will make me feel, whether I'll be up to blogging or emailing, etc. I thought it best to post a short update at least!

In short, we have decided to head towards IV antibiotics in the form of Rocephin. I spent a great deal of time discussing this option with Dr. Lyme, Dr. ANS and Dr. PCP. Our family also spent a lot of time talking over the risks and benefits of moving in this direction. It was not an easy decision to make. For those of you who have seen Under Our Skin, you likely have some sense of what I'm facing. The movie actually helped to clarify this next step for me.

I feel that I'm not willing to say that where I'm at right now is 'good enough' if there is a shot (within reason) at regaining significant quality of life. Hopefully I will be able to discuss this further in a future post.

To begin this journey, I will be getting IM (intramuscular) injections of Rocephin every day this week to make sure that I am not allergic to it, and that I can tolerate it.

On Monday, Tuesday and Wednesday of this week I will get the Rocephin in doses that are titrated up each day (125 mg on Monday, 250 mg on Tuesday, and 500 mg on Wednesday). All of these doses will be done under surveillance to watch for allergic reaction.

As long as I am not allergic to the Rocephin we will continue with Step Two, which is to receive doses of 500 mg every weekday. The typical daily dose in patients with chronic Lyme is 2 grams daily, so we are taking things slowly. Injections of Rocephin are done using lidocaine to ease the pain, but they are reportedly very painful. According to Dr. Lyme, most people cannot tolerate them for more than 7-10 days, but since I am taking less than a full dose I'm hoping to stretch that out a little longer. So that may determine how long I am able to continue having repeated sticks in the toosh before going to a port!

It's been a strange beginning to the new year. And feels strange to embark on this new treatment on Yom Kippur--the day God does or does not seal us into the Book of Life for the year. I hope that I have listened well to God as I have pursued this path.

While I am nervous and anxious about what is to come, I am also ready to start treatment again. (No, I'm not ready for the misery of herxing....but I have begun to go backwards, and the longer we wait to start treatment the higher the infection burden we have to deal with).

So, as Dr. ANS says: "Onward and Upward." Or so I hope.

I'll keep in touch via blogging, facebooking, and emailing as best I can during this journey. Thank you for your loyalty through this all.

Blessings,

Emily

Photo: Impatiens are still blooming in the yard!

Autumn Begins

In honor of the start of Fall, I took a few photos around the yard earlier in the week.

The sedum are extremely rich in color this Fall. Perhaps because of the cooler summer?

The burning bush beginning to change. This is the bush we planted when I marked my 10 year anniversary of getting sick.

Yellow mum. Check out the bug hanging out on the flower!

White mums.

When I was a little girl my parents would say: "Look at that sunset! Isn't it beautiful?" I would look at them like they were soooo boring to think a sunset was interesting! They would always mention the beauty around us, but it wasn't until after I got sick that I really started to pay attention to the beauty that was right in front of me all along. Now I seek it out and immerse myself in it more and more each year.

It sure did take a long time for me to appreciate their attention to the beauty of nature. Oh, how I have tried my parents' patience over the years.

Aster.

I told Mom how much I enjoy observing the fruits of her labor!

I am still wondering how it got to be Fall already. Nonetheless, hope yours is off to a beautiful start!

Blessings,

Emily

Photos: Plants around the yard: Sedum; Burning bush; Mums, Aster.

First Day Of Fall Outing

Mom took me (and Asher) to another park today that we had never been to. It's literally five minutes from our house, so we were able to go for a short time and come home. This barn with lovely horses outside is right in the middle of the park! Everything has been developed around this area, but this little spot has been preserved.

The park has several paths, benches throughout, lovely open spaces, a playground, a pavilion, and a dog park. I'd love to take Asher to the dog park, but I'm just not quite sure how he would do.

In the photo below you can see a large area behind the barn full of little gardens. This community garden has hundreds of parcels for people to rent and plant their goodies. Amazing!

I'm in the midst of what's been a stressful and frustrating medical phase right now. Yesterday, I was so stressed and my ANS was so out of control that I think I reached a level of not being able to calm it down. I was awake until after 6 am this morning.

I was exhausted today, but also really needed an outing to try to calm down and put things in perspective. So off to the park we went! Once we get outside in the fresh air and the beauty of nature my entire body calms down. I could, however, do without the ragweed this time of year.

I am so grateful to Mom for giving me a little noodge and making me go out today. I haven't blogged about the medical stuff yet because so much is still in flux. I finally have an appointment on Friday with my PCP to see if she is on board with the next step in the Lyme treatment, and I'll hopefully update my blog then. The last two weeks have no longer felt in any way like a 'vacation' from treatment.

Going to the park today was a great thing to do to celebrate the first day of Fall. In Jewish tradition, the time between Rosh Hashanah and Yom Kippur is seen as a time for introspection and reflection, so I'm really trying to keep my focus on that also.

I wasn't up to being out for more than a short outing today, so I'm looking forward to going back to this park again and checking out the many other paths!

Blessings,

Emily

Photos: Small farm in the middle of the park; Community garden area; Large open areas around the park; Paths to st-roll on

Sunflowers

Catie, my 'new' massage therapist, brought these GORGEOUS fresh-cut sunflowers for me on Sunday when she came for my afternoon session. After Rebekah had Kale, I found Catie. Pretty good find, huh? :)

I have never seen sunflowers so beautiful. When you read this post (Tuesday) it will be the first day of Fall. Can you believe it?

Catie does Cranial-Sacral Therapy, something I've used in the past and am rediscovering now. Sleep is such a challenge for me and I never fall asleep on the massage table. Until Catie, that is. Now I fall asleep almost every week, then promptly crawl into bed for another two hour nap after she leaves. Amazing! It's a good way to start the week and spend a Sunday.

Now if only I could hold onto that level of relaxation all week, especially on Mondays. Today was an especially frustrating medical Monday.

Happy Fall!

Blessings,

Emily

Photos: Sunflowers from Catie

Let The Music Begin Again!

On Wednesday of last week, I finally sold my beloved alto saxophone.

Here are some pics of my Yamaha YAS-62 professional alto saxophone. It's a gorgeous instrument in pristine condition, and someone needs to be using it to make beautiful music again.

As I got it ready to sell, I played a few notes on it and I still sounded pretty good, if I might say so myself!

Every fall the music boosters holds a used instrument sale. And every fall I debate and debate whether or not to finally sell my saxophone. This year, I finally decided it was time to do so. Even though I was finally ready to let go and sell it, the process was filled with emotions. Why? Because it's not about the saxophone. It's about the senses of loss and grief I continue to feel as part of the chronic illness.

I have had the same vivid dreams for years now--of going the band room to find my saxophone and it's not there, of not being able to make it to marching band practice because I'm sick, of losing my place in symphonic band. In many of the dreams, illness keeps interfering with my opportunities to participate in band activities. Either that or I get to the band room and all of the crappy saxophones are there and not mine! I'm really hoping that these dreams are going to stop now that I sold the darned thing!

After the sale, Mom called from the high school to say: "I'm leaving empty handed. I have a check in my hand." My stomach flipped and I felt a little sick.

We really didn't think it would sell because most parents are looking to buy a lower-end instrument. If it hadn't sold though, I would have had to pursue other avenues to sell it and I really wanted the money to benefit the music boosters here. In the end, the instrument sold to a dealer, not a local student so my saxophone won't be filling the same auditorium with music as it did when I used it.

The next day after the sale, I finally felt a new sense of relief.

I felt relieved that the saxophone was no longer sitting in a closet unused. I also felt that I could finally let go of any unrealistic expectations I had about either playing the instrument again myself or passing it on to a child of mine. If I do have a child, I want them to choose their own passions and activities, not my old ones.

And even though I love everything about this saxophone--the memories it holds, how it sounds, how it feels to play it, and the beauty of the instrument itself--I cannot picture myself playing it again.

Even if I got better would I ever play it again? Would I want to? I don't enjoy playing alone. I love playing in a group. While there are community bands and such to participate in, I just can't picture playing saxophone as one of the activities I'd want to go back to.

I think it was hard for me to admit this to myself, especially after putting so many years and so much love into playing music and into the purchase of the instrument itself. It was the first big thing I saved money towards.

In the end I don't need a lovely instrument being left unused. I already have all of the memories of marching band, jazz band, concert band and symphonic band, and community theater performances. I have the memories of the friends, the teachers, and the lessons I learned. I have the memory of what if felt like to buy, play and enjoy such a gorgeous instrument.

Most of all, I have the love and appreciation of music forever in my soul.

When I feel better, I need the emotional space to find new ways to enjoy my passions. By selling the saxophone, I made space for the new and let go of a little bit more of the past, to which I often hold too tightly.

It's time for someone else to make beautiful music! Let the music begin again with someone new.

Blessings,

Emily

Photos: My YAS-62 alto saxophone, ready for the instrument sale.

L'Shanah Tovah

Somehow the Fall holidays always seem to sneak up on us and catch us a little bit off guard in our home. My birthday, Rosh Hashanah and Yom Kippur all fall around the same time and I have bittersweet feelings about each passing year.

What do we hope for in the new year? We wish our loved ones a sweet, happy and healthy new year.

Tonight at dinner, Mom and I talked about some things we'd like to focus on in the new year. As soon as I get word from my PCP I'll be starting my Lyme treatment again. I asked for the strength to endure what is to come. And I hoped that this will be the year that Mom and I will get to go on a vacation together--to celebrate her 65th and my 35th in 2010. We both asked for a little more 'duck oil', a little more balance, a little more joy.

We ate free-range petite hens, tzimmes made with local sweet potatoes and carrots, and local apples with honey. Oh, and we roasted marshmallows on the grill afterwards. We lit the candles and said the prayers. We st-rolled under the clear moonless sky filled with stars listening to the songs of the cicadas and crickets.

This afternoon, neither of us felt in a celebratory mood at all. I was feeling sick and Mom was having a tough day. As Mom cooked dinner she said she began to feel the celebration within her. When I woke up from my nap to the smell of the tzimmes my heart sang.

We were both reminded of the importance of the rituals of the holidays. In our home much of how my mom shows love is through food and cooking. I am the fortunate recipient of her good cooking. I try to show lots of love back by being an 'excellent eater'! And food is a deep part of Jewish culture. So as we ate our meal and reflected on the year ahead we both felt the blessings of Rosh Hashanah.

L'Shanah Tovah! May your year be sweet, healthy and happy.

Blessings,

Emily

Photos: Apples with honey; Tzimmes