hitting the road

Tonight, we're heading down to Southern CA. Spencer's brother is home from Iraq for a couple weeks - we are so proud of his hard work and sacrifice to serve our country and are thankful for the privilege to see him. We're really excited to see him and all of the rest of our beloved family and hopefully, time and energy permitting, a few friends too.

Once again, I've been meaning to blog sooner. I spent this past week confined to bed and feeling miserable - so really, not much new to update on besides our trip and feeling worse again.

I'd greatly appreciate prayer about our time out of town. I am so eager and happy to see loved ones, but also concerned about how much I'll be able to handle physically, as I am struggling a great deal. Please pray that I would have the energy to focus on conversations - lately, communication has been very difficult for me - I can't seem to complete sentences, forget what we're talking about mid conversation, and in general am very spacey. Often times I'll be talking with someone and at some point while they're speaking, I'll suddenly realize that I have no idea what they are saying, can't remember what we've been talking about, and don't know where I went - it's like a switch is flipped and my mind shuts down. This is so frustrating for me, and makes me feel like I'm missing out on connecting with others in a meaningful way. I'm trying to go into this weekend with the mindset that I'll do my best, but not stress or worry about how "with it" I am. Just the ability to see family and friends face to face will be WONDERFUL and I am grateful for this opportunity. :)

changes

It's been quite a week. And we've come to a pretty big conclusion.

Spencer will not be taking classes this spring semester. He will continue to work on his senior project, but that is all. We prayed, agonized, weighed our options, talked it over and over, prayed more, and sought counsel from wise people whom we respect. We made our decision, we have peace about it, and we firmly believe that it is the best thing for my health, our marriage, and our sanity.

It was an incredibly difficult choice, as we both firmly believe that Spencer should finish school, and we really want him to finish as quickly as possible. But after these nightmarish past five months of immense suffering, let alone the fact that our entire marriage thus far has been plagued by a seemingly endless "relapse," we knew something needed to change. We can't change the fact that I'm so ill, that Spencer needs to work to support us, nor the increasing medical expenses, many of which are not covered by health insurance. But we can control whether Spencer is in school.

We're both feeling relief, rather than dread, as we look at the months to come. Day to day life is still very difficult for us, as we try to cope with such a consuming illness, but at least we've removed something that demands a great deal of Spencer's time and energy. We both feel that this change will be a healthy, positive one, allowing us to better focus on getting me well. We pray that this would be a time of healing, recovery, and growth for both of us. We are planning on Spencer resuming classes this fall, hoping and anticipating that by then I will be stronger.

---

As for my health status since going off of antibiotics... Not much of a change, but we have both noticed a few subtle improvements: An increase in mental clarity/energy. Feeling less like a dense fog is engulfing my thoughts. Feeling less like I'm dying. I noticed the most improvement early on this week, but have begun to slump back down a bit yesterday and today. I am slowly upping the dosage on the Cat's Claw, and those pesky bacteria are not liking it. There is a battle raging in my body. No wonder I feel so miserable.

So far, no notable change from all the new vitamins and supplements I added to my regimen. But I am confident that over time, they will help strengthen my body, especially my immune system, so that I can better fight of the Lyme. I am taking a ridiculous amount of capsules and tablets. It's quite an ordeal trying to get them all down - I'm a pro pill swallower, after many years of downing up to 30 pills per meal, but it is difficult with my shrunken tummy - I get full of water from taking the pills and then have no room to eat much of anything.

I think of my dear sister-in-law, Heather, as I type this, as she herself is struggling greatly with her health and has quite a shopping list of supplements to take, even more than me. Please, when you pray for me, please remember her too. It really is very strange that she and I would both be having such a rough time with debilitating, miserable symptoms that are so similar - we are both quite curious, wondering what God has in mind. Please pray she would get answers for the cause of her illness and that she would be healed!

---

One last change. This one not so important, but I figured I'd mention it :)

I cut my hair. Very short. I've been gradually shortening it for quite some time, out of an attempt to keep it as low maintenance as possible. A week or so ago, Spencer helped me with trimming the back, and I gave him permission to go to town. Haha, he sure did. And I like it. It hasn't been this short since I was about 6:

Don't worry. I don't look nearly this silly now... I think.

I'll try to post a picture of the new 'do soon.

the latest in this Lyme adventure

This could turn out to be long and rambly and likely incoherent... If you aren't interested in rambling medical details, this might not be the post for you :)

My appointment on Thursday went very well. It was productive and we gained new, valuable insight. We didn't exactly get encouraging news - we learned that my body is even more broken than we thought and we also have new concerns about Lyme that we never would have imagined. BUT, despite the discouraging situation, we still did leave the appointment encouraged, hopeful, and refreshed. Thank you to all of you who have been faithfully lifting us up in prayer - God has been so gracious to answer our prayers about this appointment.

Spencer was able to get off work to come with me, which was such a blessing. It was also good for him to be able to meet my doctor – he was really impressed with her.

After hearing about how sick I have been, with no change except worsening of symptoms, my doctor decided that the antibiotics are too hard on my system – she said that my symptoms do sound like a “die off reaction” (herxheimer reaction), but that I should experience more variation in symptom intensity (ie 10 horrible days, then 10 bad days, then some more horrible days, etc), rather than 1 solid month of misery. She was also concerned about my continued weight loss. I had blood drawn on Monday because she has wanted to monitor liver function, since the antibiotics can be hard on the liver. Most of everything came back normal, but my bilirubin level was elevated and the past few days we have noticed that the whites of my eyes have yellowed – both indicators that my liver is struggling. It was good, ultimately, to get a month's worth of aggressive antibiotic treatment, but we decided no more antibiotics for the time being - it's just too much.

We discussed various herbal supplements for helping treat Lyme. They will take more time to fight off the infection, but my doctor really feels that this is the best course of action for now, seeing how poorly my body, especially my liver, tolerated the antibiotics. Today I started taking Cat’s Claw and then eventually will add in Cumanda – both very potent herbs that have been successfully used to treat Lyme. I will start off on a low dose and slowly increase dosage as my body tolerates. I was warned that once again, I will experience die off reactions and have periods of time where I feel MUCH worse, but my body should hopefully tolerate the herbs better than the antibiotics.

So much of what we learn about Lyme is both fascinating and discouraging. We both laugh about how after such a long time suffering from a mysterious illness, that I end up with one of the most controversial illnesses in the medical community. There is still much that is not yet understood about Lyme, and we continue learning more and more implications about how Lyme could impact our lives - it's been discouraging and even alarming, but we're trying to take each day as it comes. Oh, how we long and pray for me to be well!

Spencer and I both appreciated how easy my doctor was to talk with and how concerned she was for me. Spencer had an interesting observation - he said that she reminds him a lot of my Aunt Ann, my Dad's sister. The way she spoke with me, listened to me, and studied me - with compassion, wisdom, and humility. I must say I agree with him now that he pointed it out, and to have a physician who treats me like my Aunt Ann does is a very good, blessed thing :) She spent a long time with us, answering all of our questions, discussing alternatives, genuinely eager to make sure we are both comfortable with our options and that we receive the best possible treatment. We feel so blessed to have found such an excellent physician.

We also went over some blood test results for vitamin and mineral deficiencies. We learned that I have a significant deficiency in vitamin B-6, zinc, chromium, glutathione, alpha lipoic acid, and serine. It’s interesting that I have been already taking several of these supplements, yet my body has been unable to absorb and utilize them. We discussed some options to help my body better utilize these supplements as well as additional supplements that would be helpful. The test results also indicated that my body does not regulate insulin and glucose levels correctly, thus predisposing me to hypoglycemia and even insulin resistance. This is something that I have suspected for some time, so, while I wish I didn’t have this problem, I am glad that I suspected it and had already been doing the things recommended for insulin resistance (low glycemic index diet, various supplements, eating small, frequent meals) and will continue to do so. Hopefully, supplementing with chromium will also help, since I have been deficient in it, and it is a crucial element in the regulation of insulin and glucose.

We discussed various ways to better support my liver and immune system, and also helpful foods to focus on, since I’ve continued to lose more weight due to a non-existent appetite and severe nausea – it has been very difficult for me to eat more than a few bites per meal, so we have been concerned about me getting adequate nutrition.

I also got a prescription for a stronger pain medication, since tramadol often times doesn’t relieve my pain enough to allow me to sleep more than a few hours in a night.

I think that about sums it up. There's more, but for now this is what I'm going to share. Please keep praying for us. Our minds are spinning with all that we are learning, processing, and deciding. Our hearts are hurting and lonely, but hopeful. Our bodies are worn out - mine ravaged by Lyme, Spencer's from working long hard hours, only to come home to a very ill wife who needs him to cook, clean, run errands, and help her with basic tasks that she often cannot do on her own, like bathing or even walking from one room to another.

We have a LONG ways to go, but we are very thankful to have such a thorough, knowledgeable, and compassionate physician to work with us on the road to recovery. And far better, we have an all powerful, all knowing God Who loves us deeply and will NEVER forsake us. We are continually humbled by His faithfulness to answer our prayers and provide us with what we need.

For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope. - Jeremiah 29:11

My flesh and my heart may fail,
but God is the strength of my heart and my portion forever. - Psalm 73:26

He has made my teeth grind on gravel,
and made me cower in ashes;
my soul is bereft of peace;
I have forgotten what happiness is;
so I say, "My endurance has perished;
so has my hope from the LORD."

Remember my affliction and my wanderings,
the wormwood and the gall!
My soul continually remembers it
and is bowed down within me.
But this I call to mind,
and therefore I have hope:

The steadfast love of the LORD never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
"The LORD is my portion," says my soul,
"therefore I will hope in him."

The LORD is good to those who wait for him,
to the soul who seeks him.
It is good that one should wait quietly
for the salvation of the LORD.
It is good for a man that he bear
the yoke in his youth.

Let him sit alone in silence
when it is laid on him;
let him put his mouth in the dust—
there may yet be hope;
let him give his cheek to the one who strikes,
and let him be filled with insults.

For the Lord will not
cast off forever,
but, though he cause grief, he will have compassion
according to the abundance of his steadfast love;
for he does not willingly afflict
or grieve the children of men.
- Lamenations 3:16-33

please pray

The past few weeks have been ROUGH. We're hoping and praying that we'll begin to see improvement soon - my body is really struggling and I am so discouraged and broken.

Each day I think to myself, "okay, this must be rock bottom. It can only get better from here." But the bottom keeps dropping out, bringing me to new lows. It has been a miserable, painful existence, to say the least.

We're trying our best to remain hopeful, patient, maintain our sense of humor, and trust that God is allowing this suffering to happen for our good. But we are also drained, lonely, and hurting.

I have an appointment this upcoming Thursday in which we will evaluate treatment and decide whether to continue or make some changes. Please pray that it would be productive and encouraging.