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

'Smartphoning'

Here I sit in my recliner staring at the screen, not even knowing where to start or what to write about. My lovely Apple computer mostly sits untouched these days, as I haven't felt well enough to spend time on it. Even the home keys feel a little bit unfamiliar after the last couple of weeks I've spent 'Smartphoning'!

I'm now super hip with my Droid. Being hip wasn't the point, of course. Several weeks into treatment, I realized that the inability to get to the computer to check email, look up a website or go on Facebook left me too isolated and lonely. Right now my entire world comes to me through technology.

So two weeks ago, I got a smart phone. I have iPhone envy, but after endless (and obsessive researching) I decided on the Droid so that I could stick with the Verizon network. I've pretty much spent all of my energy learning how to use it, getting it set up and checking in with my world again. It's given me a sense of mastery to figure out how to use it and customize it to my needs (including making the virtual keyboard pink!).

It's lovely to have email, texting, chat, web search, Facebook, and all of my contacts all in one place. I can download podcasts of things like the NPR Shuffle or Most Emailed Stories, listen to Pandora radio, check the weather and set the alarm to remind me to take my midodrine. And, of course, there is an 'app' for everything, but I haven't spent too much time searching the market for those yet.

I'm back in touch with the outside world again and it feels good. I love that I can check in with my mom over chat while she's at work, follow the happenings on Facebook, and most of all, read emails again. I can go on for just a couple of minutes at a time and then rest. Instead of trying to hurry through an email because I need to go lie down, I can lie on the sofa and really savor the email. And I can re-read it any time I want to.

So far I'm not too great at typing on it. How do the 'young folks' make their thumbs type so quickly? And I have not figured out how to be Miss Brevity yet. But if this phone doesn't teach me that, I do not know what will! I am excellent at clicking the 'Like' button on Facebook, so make sure you check to see who likes your updates! :)

I've still been bad about getting lovely emails and wanting to write a long response. Instead of writing something, I write nothing because I don't know how to say what I want to say more briefly. That falls in my 'to work on' category of personal growth this year.

One of my other concerns is maintaing balance now that I have constant access to email and the internet...but I think I've used my energy for the day and will try to address that another day!

Just a little check-in from my blog to let you know I'm back in touch with the outside world, thanks to this very generous gift from Dad and Abbie.

Today, I'm 13 weeks into treatment. Hooray!

Hope your 2010 is off to a good start!

Blessings,

Emily

Photos: The Droid