X's and O's

We were able to mark 18 weeks of treatment with an outing to the little local pet store. My uncle reminded me of the religious significance of the number 18. Chai. Life. So it was good to mark the day doing something that always makes my soul soar.

Going to the little pet store with Mom, Asher and The Rolls is on of my favorite things to do. Of course, Asher does not need one more toy or one more of anything for that matter. So we always go to stock up on his favorite treats.

Aren't all of these little treats so cute? I love getting the X's, O's and Hearts the most!

I know it's silly how much I love this as an outing, but everyone who works at this store is crazy about dogs and crazy about doing good for them. Asher is always a star when he goes. I think I eat up the attention as much as he does. In the car, he senses when we are getting close to our destination.

It's such a 'safe' place to go in the The Rolls. No one cares about the chair or that I'm sick. We all just love and enjoy dogs. I totally went in my PJs! I am very, very serious about this pajama thing!

We topped off the outing with a goodie from the farmer's market: a homemade date nut roll. Yum!

Not the best decision on my part to continue on to the market after the trip to the pet store, but I just wasn't ready to head back home yet. I figured if I just rested in the car with the seat reclined I'd be okay, and I stayed in the car while Mom popped into the market. It's frustrating how just a few extra minutes tagged on to an outing can be the tipping point.

So, Asher and I were both pooped after our outing. Of course, he had no problem sleeping whereas I ended up having difficulty napping and did not fall asleep until 5 am the next morning. I caught up on three hours worth of BBC World news, though, and finally fell asleep when the rest of the world was waking up to Morning Edition. Ugh.

Still, it was grand to get a mini-outing in, especially one that I love so much.

Blessings,

Emily

Photos: X's and O's; All kinds of fun shapes, flavors, crunchiness, and sizes!; his daily bones to work on that old man tarter build up!

Tolerable

From the trenches here's the 18 week update on the battle at hand. The number 18 just keeps making me think of being allowed to vote. Do I get some sort of vote that I want this to get better now?

One of the biggest issues I've faced in the past few weeks is how to forge ahead without making the treatment completely unbearable. Dr. Lyme does not want things to be miserable or intolerable, but most of the time they are.

I'm pretty determined and I tend to approach the treatment with my former Type A personality, hoping the hard work now will pay off in the long run. I just want to get the worst of this all over with, plus I wan to KILL THAT LYME! I just keep trying to gut it out. I want to get the show on the road and be a part of the world.

But sometimes that can backfire. It's a constant test of patience, trust in the process, and listening to my body.

Rebekah always tells me to listen to my body even though I don't always want to. And that my body tends to speak more loudly than other people's. This always makes me smile.

How do we balance killing off the Lyme with making sure the toxins from the die-off are leaving fast enough? How do we know we're keeping up? How do I know if I'm doing what is best for my body?

I pushed so hard with the malarone that I reached a breaking point emotionally and physically. That is when Dr. Lyme said to slo-o-o-o-w down and increase the medications more gradually.

The last few weeks have been incredibly trying in ways I never could have imagined they would be, especially emotionally. I do realize that when I'm physically exhausted, it's difficult to have much perspective.

The major question is how hard to push and what is tolerable? How do we define tolerable?

I don't know and there's not easy answer.

I want to give the malarone a good solid 4-6 weeks to see if I adjust to it. I feel like I have started to a bit. I feel, too, like it must be doing something to the babesia, which we also really need to kill off because my muscles feel full of 'junk'.

On Thursday when Maxine was here she said the muscles in my arms felt like there was sludge in them. And that's about how I feel physically all over. Like I'm moving through sludge. And my brain is clogged up too!

It's always good to be congruent. I love when the bodyworkers feel the things in my muscles that are congruent with how I feel overall.

How do we make the treatment tolerable, yet still make sure we're 'getting the job done' with the Lyme? If you've seen Under Our Skin, you know a lot of the treatment was pretty unbearable for most folks.

What's tolerable is certainly going to be different for each person. For me, I know that given how sick I was to begin with and how sick previous treatments have made me, I'm going to be pretty sick from this new regimen. And I signed up for that. I know it's part of the deal.

"Tolerable" for me is usually miserable, but I haven't found the balance in terms of knowing just how miserable is "tolerable." Does it mean I can get to the computer to blog here and there? Does it mean I can watch a little TV?

When I have too many days when all I can do is lie around and feel sick, keep the room quiet, and not do anything except think about how sick I feel that's when I reach my 'intolerable' quotient. That's what happened with the malarone on the first go around.

It's day by day. Some days are more tolerable than others. And we'll just keep trying to find the balance as best we can in the midst of knowing that 'tolerable' is still going to be some version of 'miserable.'

Blessings,

Emily

Press and Sealed

Press and Seal, You're the One,

Making Bathing Poss-i-ble!

(to the tune of Rubber Duckie, of course!)

Who knew Press and Seal was so versatile?

For the most part I'm used to the port and it's serving a tremendous purpose right now. So while I still get frustrated with the limitations it places on me and the self-consciousness I feel over it, it's an amazing tool for my healing.

The things that still frustrate me are:

1. Not being able to lie on my stomach for my massages. (This may seem like a little thing, but my massages are so key to keeping the toxins moving, not to mention my mental health!)

2. Not being able to lie comfortably on my left side. (My left side is my go-to side for stopping an ANS storm. I can sort of lie on my left side...I just have to do it very carefully!).

3. Not being able to get a bath on my own and all that goes into getting a bath.

Also a touch disconcerting is the sound of the plastic from the huber needle access against the plastic of the dressing. Crinkling and whistling sounds of plastic coming from my upper chest are a bit strange! Thankfully, I really don't think anyone else can hear it!

Getting a bath at the end of each day was always, literally, one of the best parts of my day in the last few years. Before my surgery I savored my baths, and was grateful we weren't one of the many thousands locally who had lost power during the three days before my port insertion!

So here's what getting a bath with an accessed port is like for me. I share this because it's really difficult to capture what things are like these days.

Essential items:

Scissors (Mom is dangerous with these!)

Waterproof Tape

Press and Seal

Plastic Garbage Bags

Mom covers the port with a square of Press and Seal, trims the excess, and then tapes it down with waterproof tape. The second photo shows one of the covers after I took it off.

She cuts a hole in a clear garbage bag, I put it over my head and wear the darned thing. We tape it to make sure it is closed tight at the neck. I expect you'll see this new fashion on the runways this fall.

The ultimate goal: Keeping the port site from getting wet.

Mom washes my hair.

Asher tries to help. He LOVES the taste of soap.

Mom cuts off the plastic bag, washes my back, and as long as I'm feeling well enough I finish getting a bath myself. On really bad days she bathes me.

Thankfully, I do have Mom to give me a bath and I don't have to have different people seeing me and washing me.

Still, I dread getting baths now. I hate that it's one more thing for Mom to do at the end of the day. I hate that we have to schedule it. I hate that I can't let the water run over the back of my neck. I hate that I can't have privacy.

The loss of dignity and the dependence hit me hard every time I get a bath.

My body has become something that doctors and nurses look at. They marvel at how unusual my case is. I'm poked and prodded. I bare my chest for the nurse each week when she comes to change the huber needle. My mom bathes me. I have a big plastic port sticking out. I'm pale and exhausted. My hair is dull and unkempt.

I wonder how one goes through such an experience and maintains any sense of beauty or dignity? I have certainly lost those. I wonder if I will ever feel beautiful in this body again?

Blessings,

Emily

Photos: The essentials for getting a bath these days; the cover that goes over the port.

Missing the Sunshine!

Today I popped my first prescription strength Vitamin D capsule. A whopping 50,000 units of SUNSHINE in each little green gel cap! I'll take one a week for the next three months.

In the past I've been on the low end of the Vitamin D spectrum and took an over the counter supplement, but last week my test showed me to be deficient in it. Too bad I can't just get to Arizona to spend some time in the sunshine and hang out with Uncle Crazy.

Last time I was in to see my PCP we spent a lot of time discussing the possibility of getting a sun lamp or other such tool to help me wake up in the mornings, and possibly help with mood. She re-tested my Vitamin D levels.

It's very difficult to sort out what's what right now in terms of my energy-level and mood. It's also hard to make sure we stay on top of all the other things that might be going on in addition to the Lyme and ANS issues. So, I'm very thankful for her problem-solving!

I'm actually hopeful that some prescription sunshine might help out a little in the mood and fatigue department. I have definitely noticed that, as much as I love the snow, I do miss getting the sunshine I was getting on my outings in The Rolls.

Blessings,

Emily

Photos: I didn't post these pics because they are really anything that spectacular but because that is one HUGE icicle we have on our house!

Sweet Treat

In honor of Valentine's Day Mom and I made these AMAZING gluten-free brownies. Okay, Mom really did all of the work since I feel so crappy, but I read the directions to her and (barely) managed to sit up long enough to measure the dry ingredients. :) I also put all of my TV watching to use. On one of the food shows I saw the women put chunks of semi-sweet chocolate on top of the brownies before they baked them, so we tried that out. Yum! Very therapeutic to hammer the chocolate into chunks.

Because of the antibiotics, I am trying to limit my sugar intake as much as possible in an effort to avoid the additional complication of yeast overgrowth. Right now I am taking heavy duty probiotics and really missing my coconut ice cream and other little treats. I'll put these brownies in the freezer and just eat them in little bits, but I just can't give sweet treats up completely!

You know how when you take antibiotics the little instruction sheet says that taking antibiotics can cause other types of problems such as yeast infections? Well, taking long-term antibiotics definitely increases this risk. Getting a systemic yeast problem on top of all that is already going on would not be pleasant.

Some people with Lyme who are on long-term antibiotics cut out all carbs, but my Lyme doctor doesn't push the anti-yeast diet. I just try to be reasonable with my choices while still eating as many fruits and vegetables as I can for the nutrition. I also have the option of taking an anit-fungal such as Nystatin as a preventative measure, but haven't done that yet.

Anyways I'm at the 17 week mark. Malarone=miserable, even at just two doses per week. (I started this post on Monday and am just finishing it on Wednesday.)

The best little note I got re: my 17 week mark was the following:

"In honor of the Olympics, here is your week 17 gold medal and podium:
[O]<=====>

___|-----|_____"

That's it for now. I think I'll have a bite of those brownies before I nap! Belated wishes for the following:

Happy Valentine's Day!

Happy Chinese New Year !

and

Happy President's Day!

Blessings,

Emily

Photo: Gluten-free brownies for Valentine's Day

Snowy Drive

Once we got plowed out from the snow storm, Mom took me for a drive in the country. The snow is gorgeous and brightens everything up. We got about 13 inches. Asher is not quite sure what to think of it all.

Other than trips to the doctor, I've only left the house a handful of times in the past 16 weeks. We've been able to go for a few drives (with Asher in tow, of course) which is a welcome distraction from being at home. The combination of a freshly fallen snow, sunshine and a clear blue sky made for a perfect day to take a drive.

We stopped once to take a few photos but otherwise I just took a few out the car window. Most of the time when we go out I just stay reclining, try to enjoy the drive, and don't mess with the camera.

All of the barns and farmland were so beautiful in the snow. I think I miss Iowa and feel closer to my midwestern roots when we drive in the country!

When you get this post we'll probably be getting another big snowstorm! Bring it on!

Blessings,

Emily

Photos: Finally we got some snow! Photos from our drive in the country.

Would You Like Some Dinner With Those Toys?

This is a common scene in our house at dinner time. As soon as dinner time approaches, Asher goes to his toy boxes, gets out multiple toys, runs around squeaking them, and then leaves them strewn around his bowl.

Then he cries and whines and waits and otherwise acts as if he hasn't been fed in ages.

Sixteen weeks into treatment, Asher is still taking good care of me every day. I couldn't get through this without his constant companionship...and his ability to make me laugh every day. He's such a clown!

Blessings,

Emily

Photos: Asher waiting for dinner...with a few of his toys.

Lyme Log: Treatment Update

Here's a little glimpse at what I'm doing treatment-wise. I'm not sure where this blessed moment of clarity has come from, but I'm going to use to it write a quick blog!

Rocephin: I'm continuing to get daily infusions of the Rocephin. Right after the new year I increased my dosage from 500 mg daily to 750 mg daily. The typical dose for a Chronic Lyme patient is 2 grams daily, so I have a ways to go!

I tolerated the increase a bit better than I expected as the worst of the herx didn't last quite as long. Overall, I seem to tolerate the IV Rocephin better than I have tolerated the oral and IM antibiotics. One major advantage is that it doesn't upset my stomach!

Rocephin is great at getting at Central Nervous System Lyme.

Malarone, Plaquenil and Zithromax: During my phone consult with Dr. Lyme last week we decided to try to add in very small doses of these medications, all of which I was on when I stopped treatment in the Spring of 2009.

Most Lyme doctors don't use IV Rocephin without combining it with other agents. Part of me would like to plow ahead with just the Rocephin, but there are reasons to add in the other medications.

While many of the antibiotics treat Lyme along with the other tick-borne illnesses, they don't cover babesia. While I have never had a positive test for babesia, we suspect that I may have it.

Babesia mimics maleria, so anti-malaria drugs such as malarone and mepron are often used to treat it. Plaquenil can also help.

As for the Plaquenil and Zithromax, they can also target Lyme in different ways. The Plaquenil can help with babesia and also the cystic phase of Lyme.

Hopefully the medications in combination will have a synergistic effect.

The goal is to add in teeny doses of these meds and then begin increasing the Rocephin again.

I will be increasing the Malarone first. Before speaking with Dr. Lyme we had thought I would be able to resume my previous dose of 1 pediatric tablet daily (adult dose would be 4 of those). Note that most people don't herx from this medication and it is usually well-tolerated. :P

So, I started taking one tablet a day expecting to tolerate it just fine. Instead, I started out achey and feverish, then I had trouble sleeping. Next my ANS symptoms went berzerk with chest pains, shortness of breath and weakness. It was more awful than the Rocephin has been so far.

I kept gutting it out for the nine days until I talked to Dr. Lyme. At that point he said: Slooowww down. So, I stopped the Malarone on Wednesday last week and gave my body a bit of a break.

I resumed it on Monday, and will take it every 3rd day or every other day, however I can 'tolerate' it.

Then, I'll add in the other meds...

I felt (and still feel) frustrated that I can't go more quickly with treatment and that everything makes me so sick.

The hardest part about Lyme and other tick-borne illnesses is that there really is no 'standard' treatment. What works for one person might now work for another. Every doctor approaches treatment differently.

Dr. Lyme and I debated for a long while whether to add in other agents or focus on the Rocephin.

I felt that we made a balanced decision to add in small doses of the other medications and then push ahead with the Rocephin.

Last week was the first time Dr. Lyme has told me to slow down! I'm having a hard time knowing how sick to make myself. Sometimes I feel like if I just push harder now, I'll get to the 'better' stuff sooner.

Blessings,

Emily

Photo: Squirrel watching. Love how he has to wiggle in between the boots and the window!

15 Weeks: Stinks A Big One

At fifteen weeks into treatment, I'm not feeling like much of a trooper. I'd have to say this really "stinks a big one," a phrase I learned from the beautiful Newberry Award winning book, Rules.

Most days I feel overwhelmed, and sometimes crushed, by the physical and emotional challenges that treatment brings.

Of course I thought I was 'prepared' for the treatment and how hard it would be, but I really had no idea how physically and emotionally exhausted I would be simply surviving each day.

I'd apologize for the 'downer' of an update, but I'm working on not apologizing so much. I'm just honestly answering the "How am I doing?" question.

Blessings,

Emily

P.S. I highly recommend the book Rules, for yourself or your children. It's an amazing story about friendship, disability, and acceptance.

Photo: Mr. Cuddlebug