Happy Passover!

Seder Plate

We were able to celebrate Passover last night. Mom always says she is going to keep things 'low key', but she always goes above and beyond with the yummy food!

Menu: Persian Chicken, Tzimmes, Asparagus, Charoset. All were very festive and very yummy.

Tzimmes

Jeannine loves coming for the holidays. At the last minute I felt up to having company (although Jeannine is more family than company!), so she joined us to read our children's version of the Haggadah and eat dinner.

Charoset

Yesterday I really saw the hope for progress and improvement in my health. I blogged, did a little yoga, rested and then had dinner with Mom and Jeannine. While I was completely exhausted and not feeling well by the end, it was still way more than I could have imagined doing even a month ago. Even during the summer when I was off of treatment, that would be a HUGE day.

So it was a very blessed day marking 23 weeks down!

Happy Passover!

And Happy Easter to those of you who celebrate!

Blessings,

Emily

Photos: Seder Plate, Tzimmes, Charoset.

23 Weeks: Light IN the Tunnel

It's 23 weeks down today! I'm happy to report I'm hanging in there (and my grip isn't even a white knuckle one! :)).

As you all know from my blogging, emailing and Facebooking, I've certainly had some very dark days during treatment. Many of them. I want very much to write about the grief I've been feeling over many things, but it hasn't 'clicked' for me yet when I've sat down to write.

One of the issues I've been dealing with is sadness, grief, and depression and anxiety. There, I said it. It's so much more difficult for me to talk about these topics than to talk about the physical symptoms. Why am I embarrassed? I would never judge another friend who is struggling with depression and anxiety. It's nonsensical!

Since stopping the malarone I've gradually felt more and more like 'myself', thankfully. I'm not sure what will happen as I continue to increase the other medications, but I'm grateful right now to report having seen a little light IN the tunnel!

Because Lyme has, at this point, penetrated my nervous system, it is not unreasonable to assume that I may have some neuropsych symptoms as a result. Lyme in the central nervous system (CNS) causes so many issues including cognitive problems, sleep disruptions, headaches, and depression and anxiety.

When taking the antibiotics to treat the Lyme, it is likely that many of these symptoms may get worse from the die-off (Herxing).

This has made figuring out how to deal with the depression and anxiety and understanding its source very difficult for me. Talk about muddied waters!

I still have no idea whether the malarone itself was making me sick (it can have some nasty side effects) or if I was herxing on it.

The questions I ask myself are: Am I actually depressed or am I sad and grieving? Am I depressed and anxious because of the Lyme disease itself? Am I depressed and anxious because we are penetrating the CNS with the antibiotics and it is part of my Herxheimer reaction? Am I depressed and anxious because this whole thing just kinda sucks? Am I depressed because I'm grieving so many things in life I had hoped for and cannot have? When does what I'm experiencing become depression over sadness? Or is it some combination of all of these?

Is it congruent, given what is going on, for me to be depressed? Yes.

Does it matter what's causing the increased depression and anxiety? I'm not sure.

It's such a difficult balance to figure out because I have had very little luck with increasing my current anti-depressant in the past, and have not had any luck with other ones. If I want to find medication to better control anxiety and depression, then I have to back off of the Lyme treatment for several weeks which I don't feel comfortable doing.

I've been trying to find ways within the treatment to nourish myself. The hardest part is knowing what I need to nourish myself and not having the energy to do it. Right now treatment has been more tolerable so I have been able to find some ways to do so: blogging, meditating, fun TV, and baby steps in the yoga department. I receive body work twice a week with two women who also help me to process what is going on. Maxine is my most trusted spiritual advisor. Each visit with her is an incredible blessing!

I'd like to add in counseling, but this gets sticky because it's difficult for me to leave the house and because it's difficult to find anyone to take my insurance. I'm thankful that right now, I've got a really great team of family, friends, and the help of Maxine as a spiritual advisor.

And, do I really want one more appointment to go to? Part of what gets me depressed is how my entire life does revolve around illness right now. It is all-consuming.

Physically, I do feel like I've made some progress in some areas. Sometimes I sleep straight through the night...EIGHT hours! Honestly, I can't remember the last time I was able to do that on a semi-regular basis. I've had less problems with my Diabetes Insipidus-type symptoms. And sometimes my pain is better. It still changes and gets aggravated by med changes or other such things, but it's something. The improvements in sleep, when they happen, work wonders for my mood!

I'm not sure what made my spirits lift this week, but they did. And it felt like some light in a very long, long tunnel. I had a couple of days when I could actually say I felt HAPPY, even in the midst of not feeling well.

One of my favorite blogs, Touched By Lyme, discussed the challenge of always searching for light at the end of the tunnel. The post was written in relationship to teenagers with Lyme, but the message still resonated with me, making me think more about how to find light now.

The author writes: "...to a teenager mired in the muck of an all-encompassing chronic illness, the promise of a better life at some distant point in the future can seem impossibly remote. Meanwhile, as their teen days, months, and even years slip away, the concept of a light at the end of the tunnel offers little hope or comfort."

This is why Kathleen Steele, who counsels teens with Lyme, focuses on finding Light IN the tunnel.

Thankfully, I saw that light during week 23.

When it comes to being nourished through this journey, I cannot thank YOU all enough for continuing to find such thoughtful and loving ways to nourish me. You bless me tremendously.

Blessings,

Emily

Am I Doing the "Right" Thing?

Almost every day I ask myself: Am I doing the right thing treatment-wise? Is this really Lyme? What's the balance between pushing through treatment and staying sane?

The problem, of course, is that there are no answers to these questions. No good tests exist for Lyme. The diagnosis is primarily a clinical one. The symptoms are so varied that it's easy to fit them into the Lyme 'box'. We have no way to evaluate progress. No scans or blood work to indicate that the spirochete load is lower.

This makes 'resting and healing' difficult for me, when I'm not even sure if I've made the best or the right decision some days.

Earlier this week, I had an appointment with my GI doctor, who I think is one of the smartest, careful, and compassionate doctors I have ever worked with. I was there for a follow-up appointment regarding the GI attacks I had been having over the summer.

After my port was inserted it got difficult to keep up blogging on all of the specialists I was seeing, but I did see a neurologist who agreed with Dr. GI's diagnosis of abdominal migraines. If I go into detail about what the heck these are and how we got to this conclusion and why in the world I'm n of 1 when it comes to getting these, this post would get way too long, so I'll save it! Plus, just keep your fingers crossed that I continue to stay free of any GI attacks/abdominal migraines and won't even need to write about it!

What I will say that is through the entire process of trying to find a diagnosis for the GI attacks, my doctor looked so thoroughly at so many possibilities. He looked into just about anything that could cause ANS symptoms or stomach pain.

When he entered the exam room this week, he apologized for making me come in for an appointment given that I had not had anymore significant problems with the abdominal migraines since our last visit. He encouraged me instead to email or to call him anytime for follow-up questions.

Little did he know that what he was about to say to me during our appointment was going to reassure me so much.

Once we got up to date on some small questions I had, I brought up the Lyme treatment.

I have a very big medical team now. Within that team is a mix of doctors who believe in chronic Lyme and those who do not.

While this can be frustrating at times for me because it makes me doubt myself, the 'intellectual tension' is a positive. It means that I have doctors looking at various aspects of the picture, and unwilling to attribute every symptom I'm having to the ANS or Lyme basket. In truth, if used incorrectly, these can be wastebasket diagnoses.

Dr. GI is one who is skeptical of the Lyme treatment. He's also searched high and low for other explanations for my symptoms. I respect him tremendously as not only a GI doctor, but an internist too. Since we had no emergent crises for a change, I had time to say to him:

"If this isn't Lyme, what is it?"

His response? We just don't know. But...

Nothing showed up in any of the tests he ran. I had an endoscopy, x-rays, a gastric emptying study, 24-hour urine studies for heavy metals and several other rare conditions, a cortisol test for Addison's disease, celiac testing, mono testing, and a zillion other blood tests for rare and unusual things.

Like with every other diagnosis I've had to date, we made a diagnosis of exclusion: abdominal migraines.

So, Dr. GI told me that while he is unsure about the Lyme diagnosis, he feels that the antibiotics are worth a try. He is careful to state that his biggest concern is that I know the risks of long term antibiotics and that I know that the treatment might not work.

It's Dr. Lyme's responsibility to evaluate at what point we do or do not think the IVs are working and whether to continue (which Dr. Lyme does for sure!).

He commented on my insightful emails and careful approach to decisions. His concern is for those who might see Lyme on the internet and decide that it 'fits' them and seek treatment without ruling out alternative diagnoses.

In medicine, as he said, we still know so little. We make decisions every day that are based on our best guess. We don't always have the testing we need to make a definitive decision. Lyme disease, he said, is somewhat of an orphan disease.

He recognizes how long I've been sick and how many avenues I've pursued.

At the end of our discussion, he said: "If you're asking me what I think, I think you're doing the right thing."

As he left the room, he again told me to email him any time with questions and apologized for me having to make a trip to the doctor.

He had no idea what he had just done for me. I still don't have an answer. I still don't know if this will work. But it sure does help knowing that my decisions are respected and validated by the doctors I respect the most.

As ever, thank you for reading. I have the best readers! :)

Blessings,

Emily

Photos: The crocuses in our yard! I am excited that I've been able to take some pictures again lately. I'd love, love, love to know which one is your favorite! I want to print one! :)

Week 22 Outing...

I find a certain comfort in trying to publish a post on the day that marks my latest 'week accomplished' in the IV treatment. I totally miscounted last week and jumped to 22 weeks. I must have been so busy celebrating turning 21, that I was in a drunken haze? Anyways, today (Tuesday) is 22 weeks down!

This last week has certainly had its ups and downs physically and emotionally, but overall I've been doing a bit better and have been able to go on a couple of outings to enjoy some of the spring weather we had all last week.

I've been able to add in 1/2 Zithromax 2x weekly.

I'm posting this picture just to prove I really do go everywhere in my PJs. Thankfully there really weren't that many people at the State Park we went to. (Carrie, that's totally my Yale hat! :))

We spent a while just sitting by the stream and listening. Asher really wanted to try to go for a swim (despite the fact that he really doesn't like swimming!).

This is one of the easiest parks to go to, since there are some paved pathways on which to take The Rolls. I wish there were more places we could discover that would be accessible. The photo above is from the original iron ore furnaces that used to be where this park is.

We went to this same park earlier in the week. Upon arrival we realized that we did not have The Rolls with us! I seemed to be in 'meltdown mode' that day, and burst into tears when I realized that we didn't have the tool we needed to go for a stroll. When I'm finally able to cry, I do it over that silly thing that breaks the camel's back. It's easier to cry about the little things than to take on the totality of everything.

So on Saturday we tried to make up for that unsuccessful outing earlier in the week!

I was able to sit up longer than I have been able to since starting the IV treatment. Unfortunately, for some reason, then I didn't sleep at all that night. How I feel from day to day and moment to moment is frustratingly unpredictable.

We were able to visit the stream at various locations, ending up at the beach area where we sat and ate a snack.

I keep thinking of the song "Spring Can Really Hang You Up The Most." In the winter time most people are inside more, hibernating, staying warm. As spring begins I feel like everyone is outside walking, running, planting flowers, playing with their dogs, etc. When it's cold and dreary outside, it's almost easier to cope with having to be inside or stay in bed. When it's beautiful and lovely out, I often feel sad that I can't engage in more 'normal' activities. It amplifies my feelings of being trapped in my body.

That seems to be the 22 week update. Definitely a smoother week than those of the teens.

Blessings,

Emily

Photos: Babbling brook; me, Asher, The Rolls, and pink PJs; Asher trying to get in the stream; Original iron ore furnace; a more serene area of the stream; the little beach area.

Studying

I have this lovely mess by my bed (I don't know why because I never make any progress on this stuff!). Piles. Everywhere. And no energy to work on them. Ugh. I am my father's daughter when it comes to having piles!

Asher found something that he was interested in on the lap pillow and plunked down.

He looked like he was studying!

He stayed there quite a while. Wish he had finished up those holiday cards that I'm still working on.

Hope it makes you smile, as he made us laugh a lot!

Every day when Mom heads to the library for work he wants to go. Maybe there is more than just fluff in that brain of his?

Blessings,

Emily

Photos: Asher 'studying'.

22 Weeks Down!

Today I'm able to see that 22 weeks is a big deal. I'm feeling celebratory that I've made it through this many weeks.

This feeling is likely helped by the fact that I:

Slept 8 hours last night

Had fresh sushi for lunch

Am wearing my favorite pink springy pajamas

Am listening to WDAV

Am getting to blog

Might get out with Mom in The Rolls for a short spin

Am anticipating the taste of a date nut roll from the farmer's market.

Oh, and the Sun is Shining!

And, yes, I'm all about food.

Most days I've been feeling a lot of sadness. Another post for another day. So I'm very grateful for the moments that the sadness lifts a little. For the nights that I get some sleep. And for the ability to engage in an activity, if even for a short while, that I enjoy or brings me satisfaction.

I got up the courage to take my first dose of Zithromax on Sunday evening. I took 1/2 of a 250 mg tablet. I think when I stopped treatment last spring I was only taking 1/2 tablet twice weekly, so it's been a difficult drug for me to ratchet up.

Last night I had a lot of tachycardia and 'air hunger'. Thankfully, despite that I slept.

As always thank you for reading and following my blog! I'm not sure how I'd keep in touch with the outside world without it.

Blessings,

Emily

Photo: Random photo I took the other day when it was warm enough to be outside. I just watched the clouds and sun and trees.

Lyme Log: Seeing A Little More Clearly Now

Last time I checked in I was getting ready to have a phone consult with Dr. Lyme. We decided to stop the malarone. I had a very, very good consult with him.

After that, I decided just to give my body a little time to see if I could come back to some sort of baseline and my mind a little break from trying to decide what to do for the next step in treatment.

I haven't had a Malarone since March 1st. I knew it was making me sick. Very sick. And very emotional. But I didn't realize quite how bad it was until I stopped. Or until I started seeing all of the symptoms I was having on it decrease in intensity.

The multitude of symptoms I was having on the malarone included: feeling feverish and flushed, muscle aches, more bad dreams, increased weakness and fatigue, feeling like I was moving through sludge, and increased 'need' to crack my neck and back, significantly increased neuropathic neck pain, increased difficulty sleeping, stomach issues, myoclonus-type symptoms, increased anxiety and depression, and an overall increase in all of my ANS symptoms (dizziness, agitation, tachycardia and forceful heartbeats).

The neck pain, lack of sleep and increased anxiety had become so intolerable that I knew I no longer had much perspective and they certainly weren't helping my body to heal.

The bad dreams, muscle aches, cracking, flushing, pain, sleep, stomach issues, depression, anxiety, ANS symptoms, fatigue and weakness have all improved since stopping the malarone. Phew.

I spent many nights awake sick, and often asked Mom to spend hours just holding me. Thank God for a mother's comforting touch. It's like magic!

Today, I'm coming off of a night sleeping over 8 hours straight. For me, this is a miracle! I am back to having treatment be 'tolerable', thankfully. I am definitely seeing things a lot more clearly now.

Because up to this point we still have no clear evidence that I do in fact have Babesia, Dr. Lyme thought it best to stop the malarone and try later for a positive test result.

We still do not know if I was reacting to the drug itself or herxing from it. What I do know is that it did reach the intolerable point! It was one big vicious cycle. No sleep means more anxiety. More anxiety means less sleep. More pain means less sleep. Less sleep means more pain. All of these mean more ANS symptoms. More ANS symptoms mean more pain and less sleep and more anxiety. And on and on. I was so exhausted I would have to say to myself: You can get up. You can move. I felt like I was moving through wet cement and my body felt like sludge.

The most difficult part about making treatment decisions is the uniqueness and difficulty of my case. We're all just muddling along, and no one knows what drugs might be the 'right' ones. So we make our best guesses. We have lots of options left to try if I do have babesia, and lots of other things to try to target the Lyme.

For now, I'm focusing on two medications: continuing the Rocephin and adding in Zithromax. Just this morning, I decided to try adding in the Zithromax. I have taken it before. It makes me herx pretty badly, so I don't know what to expect. I'm starting out with 1/2 of a tablet per week (maybe I'll get up the courage to take it Monday?).

Spring has been showing its face and getting some fresh air for the first time in many, many weeks has been fantastic! I'm sure there is more cold weather in store for us and probably even more snow, but that's okay with me.

On Tuesday, we took The Rolls for a spin by the golf course. The challenge is finding anywhere to go that isn't snow covered. Most paths are not clear yet, which is frustrating. On the previous Saturday we had also tried to go out and found ourselves wheeling around an office park area just because it was quiet and the lots were clear.

The golf course was much more scenic! Just to be able to sit up long enough for a very short ride is a big, big change.

If I can get out for a little outing here and there, feel well enough to watch a little TV, or knit a bit, I start to feel that treatment is tolerable. On malarone I was too sick to even watch TV. It felt so good to watch a movie the other day.

I don't know how the next step in treatment is going to go, but I am very glad not to be taking the malarone anymore! Mommy Bev left a message on my phone suggesting I just give my body a little time to rest from treatment changes, which was just the 'permission' and advice I needed to stop pushing so hard.

The malarone experience really wore me down emotionally and physically.

I'm still recuperating. I've needed so much alone time and quiet time just to come back into balance. I'm sorry that your emails and messages of love have gone unresponded to.

Thank you for your patience during the ups and downs of treatment. You continue to lift me up over and over and over again with your messages, texts, calls, snail mail, and fun gifts of all sorts.

Blessings,

Emilly

Photos: An outing to the golf course.

19: Last Week of the Teens

Just a very quick check in to mark my last week in the teens!

I'm having a great deal of difficulty tolerating the malarone. I have a phone consult with Dr. Lyme to see where to go from here, so I'll hopefully touch base with y'all after that.

Hopefully we'll be able to come up with some sort of balance to keep treatment moving along without it being quite so intolerable.

In the meantime, THANK YOU for your continued love and support. You have been amazing, and I've been unable to tackle replying to emails much lately. I LOVE reading your mail on my spiffy phone though.

And to the reader who sent me a very generous amazon.com gift card anonymously, THANK YOU! Of course I can always find a book on CD or DVD to purchase! I'm still trying to solve the mystery of this gift-giver. Who are you? :)

Blessings,

Emily