goodbye, Petrova!

Well, after 23 long months of dwelling in my body, Petrova the Purple PICC line was removed. This momentous event took place in mid December, following Dr. J's okay to have her pulled.

Nearly 2 years prior, right after getting Petrova placed:

The nurse who pulled the line said that it was in GREAT condition for how old it was, thanks to Spencer, who took such diligent, loving care of my arm and of Petrova. Thankful for this amazing man!

So excited!

One last look at how Petrova has been protruding from my arm for 23 months...

Here we go... no blood or goriness at all!

Almost out...

No more PICC!

They let me keep it :)

And yep, we're probably going to put Petrova in a frame or something. Because we're sentimental nerds :)

This PICC line allowed me to get the treatment that I so desperately needed and was so key in the progress I have made.

More to say about it all, but me-oh-my, I am LOVING being able to take showers free from fear of getting the line wet! Such a blessing! And we are LOVING that Spencer no longer has to do dressing changes 1-2 x every week. Huge relief!!

I'll try to write out more later about my current state of health, treatment, implications of no PICC line, etc...

starting to catch up...

I wrote this back in early December:

Valleys I've been sunk in a pretty deep one all month. November turned out to be quite a doozie. And I've had a pretty awful attitude about it, honestly. September and October held some really "good" days for me. I was more independent. Stronger. Felt more alive. Able to go to church and our bible study group fairly regularly. I got to go to one of our local Lyme Disease support group's meetings. There were a lot of small, yet for me, big victories. It was wonderful! Then I began another cycle of abx the first week of November. It was the same protocol that I've been on for several months, but for some reason that cycle really hit something. I started the week off okay, but by Friday I was completely knocked off of my feet with strong die-off reactions. Miserable and completely debilitating. I thought I'd recover after that cycle during my drug holiday, but after half a day of thinking maybe I was starting to bounce back, I crashed and got continually worse. Being bed/couch ridden was not the way I planned on spending my drug holiday. Desperate for relief, I was pretty pitiful and pitifully threw myself a pity party. Two weeks ago I began a cycle of a new protocol. It's the intense one I was on earlier in the summer, but Dr. J has revised it some, to be even more effective. I continued to be very ill and feel awful from the new die-off. The second week of the treatment wasn't quite as terrible feeling, just debilitating. I slept. a lot. at weird hours and durations. Most days I was too drained to handle anything beyond very basic communication. When I'm quiet, that's when Spencer and I know that I'm really sick. I had a few days that I could handle interaction better and spend time with a couple of friends, which was encouraging, but also very difficult to recover from afterwards. Not including the first few days of November, I have seen 3 people besides Spencer for the rest of the month. Well, okay, I saw my local doctor once and also two phlebotomists last week when I actually left the house to get blood drawn :) November was hard. Very very hard. I've been processing it the past couple of days, writing stuff out, praying, reading. And I'm sad that I had such a bad attitude. Yep, I was suffering greatly. But even in the midst of the delirium and pain, God was working in my hard, hurting heart. I wasn't having a very grateful attitude. God works all things together for our good. All things. For. our. good. The pain, though not wanted by me, was for my good. For reasons I may never understand, right now being very sick is what is best for me. It's such a difficult thing to grasp, that I am better off sick than if I were healthy. I spend so much energy worrying, griping, and desperately trying to escape my situation when I need to just rest and trust that God is indeed giving me the very best. “God whispers to us in our pleasures, speaks to us in our conscience, but shouts in our pains: It is His megaphone to rouse a deaf world” - C.S. Lewis And now I'm done for 2 weeks. I'm infusing IV fluids right now to help hydrate and flush out toxins.

I needed to read this today

"...Beware of fretting, murmuring, complaining, and giving way to an impatient spirit. Regard your sickness as a blessing in disguise—a good and not an evil—a friend and not an enemy. No doubt we should all prefer to learn spiritual lessons in the school of ease and not under the rod. But rest assured that God knows better than we do how to teach us. The light of the last day will show you that there was a meaning and a “need be” in all your bodily ailments. The lessons that we learn on a sick-bed, when we are shut out from the world, are often lessons which we should never learn elsewhere.

~ J.C. Ryle

ten years

Ten years ago, in mid August, I spent a week in Sequoia & Kings Canyon National Parks with my church's youth group.

My first symptoms of Lyme Disease appeared that week.

Here I am that very week. about to begin my junior year of high school.

I was thriving.
physically. emotionally. spiritually.


That week I spent a lot of time in prayer, telling God that I wanted to better know Him. I wrote a prayer down in my journal, where I asked Him to ”do whatever it takes" to bring me into a closer walk with Him.

I didn't look back on that journal entry until several years after getting sick. I was floored when I found it.
God was VERY faithful to answer my prayer. right away.

It just took me a looong time to recognize that Lyme was a blessing.
Yes, a blessing. For so long I viewed it as a trial to suffer through and no more.

It took time to see that through that suffering, God was working in my heart and doing the very thing I asked Him to.
To draw me closer to Him.
than ever before.

I still struggle a great deal with truly embracing that trials are for our good.
I know in my head that they are, and have seen the wonderful work God has done in us through Lyme,
but my restless, rebellious heart often believes otherwise.

And in spite of my kicking and screaming, crying, shaking of my fist, despairing, complaining, and resenting....

God has been faithful and kind in continuing to grow and refine my heart.

We've been treating Lyme for nearly 3 years now.

It somehow surprises me, as it doesn't feel like it's been that long.
So much of it has been one big painful blur.

But when I go through the realization that it's actually been 3 years,
it quickly feels overwhelming.
especially when I remember that we have several more years of treatment ahead of us.

All of this wasn't in my "plans."

I had so many life "events" that I hoped would have been checked off on my "to-do" list by now. I struggle a lot with those "if only" and "what if" thoughts.

My birthday was in August. I admit that it was somewhat discouraging to look at that number. I know it's just a number. but still. It was hard.

I read a timely quote a few days after my birthday...

"Age doesn't matter, unless you're a cheese." ~ Billie Burke 

:)

Rather than focusing on my age and all the things I had hoped would happen by now, or worrying about the future, I need to be in the now.

Pressing forward, but taking things day at a time. Hour at a time, really.

Choosing gratitude.

for the place God has us now.

trusting that God is good. completely 100% good.

He is using this season in our lives to do just what I had asked for 10 years ago.

growing us. teaching us. refining us. drawing us closer to Him.

I've been struggling lately, so desperately wanting to be done with this season.

I know there is so much God is teaching us through it, but some days the pain feels unbearable and I wonder when will we ever get a break??

Thankfully I AM healing, heading in the right direction, but it is such a slow journey. Although I'm much better than I was, say, 2 years ago, I am still a very sick girl. We are still very much in a season of illness. with a long ways to go.

But as long as God has us in this season, I want to make to most of it. Not let it go to waste.
be teachable.
and thankful.


"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way." James 1:2-4 - the Message


"...rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope." Romans 5:3-4 - ESV


I do admit that I'm weary.

Mentally, physically, emotionally
drained.

But when I examine it more closely,
it's sort of a "good" weary, if that makes any sense.

The sort of the weariness during and after a long hike on a beautiful day.

Your body aches and is weak,
but the exhaustion and pain was worth what you experienced.

Indescribable beauty and joy that would not otherwise have been discovered without the hard journey.

"in my deepest wound i saw your glory and it dazzled me." - st. augustine

Have you not known? Have you not heard?

The LORD is the everlasting God,
   the Creator of the ends of the earth.
He does not faint or grow weary;
    his understanding is unsearchable.
He gives power to the faint,
   and to him who has no might he increases strength.
Even youths shall faint and be weary,
   and young men shall fall exhausted;
but they who wait for the LORD shall renew their strength;
   they shall mount up with wings like eagles;
they shall run and not be weary;
   they shall walk and not faint. - Isaiah 40:28-31

our August appointments

Well, here it is 2 months after our appointments. Better late than never! :)
I find that I'm either too fatigued to write and on the days that I do have enough energy, that I don't want to write because I want to be up and about.
We came away from our appointments feeling encouraged, focused, better informed, and glad to be on the same page as our doctor.

Petrova the Purple PICC Line also came home with us.

And that's okay. She's sticking around for some good reasons.

for NON IV antibiotics reasons!

Yup, no IV antibiotics. Haven't been on any since MAY.


It's been difficult for me to articulate a summary of our appointments. I've really been struggling cognitively. Especially in the speech and writing compartments. There have been instances where I've literally spent HOURS staring at ONE sentence, trying to figure out how to make it make sense.

It changes hour to hour. Sometimes I can speak normally and write alright. Others I can barely speak or write at all. We've had some good laughs at some of the things I say - misplaced words, bizarre wording and arrangement of said words when I'm attempting to explain something, etc.

I am, however, doing so much better at READING! Writing is so hard, trying to convey things, but I'm doing better at taking in and processing info.

And actual talking has become easier. but writing, I don't know what it is... it's so hard and slow going!

Okay. back to the appointments.

You know what, my mind is muddled. I really can't explain it. I WANT to explain the whys and hows and get really detailed. But for now, let's just look at the basics:

- I'm on oral abx. different ones. gentler, so that my body can recover and detox after such a rough summer.

- while I haven't made progress by leaps and bounds, I am a great deal more stable. No backsliding and we can tell my body is continuing to slowly heal.

- Dr. J was pleased with how I'm doing overall. He is still concerned about how sensitive I am and how complex my case has been. HOWEVER, when we asked him about where he thought I was in the treatment/recovery process, he said I am slightly OVER the peak of the mountain. Still precarious, but the worst is very likely behind me! This was such an encouragement!

- We also asked him about how much longer he thought I would need treatment. He said that realistically, it would likely be another couple of years. We kind of expected that, but it was hard to hear. But I have to remind myself that these two years will become less and less intense as I continue to heal, with more and more good days. Treating lyme really is a marathon. Not a sprint.

- The super tough parasite protocol I was on over the summer has been adjusted as he has observed how patients were responding. He now has a better idea of how the different antibiotics were nailing various bacteria and parasites and how that all interacted with our immune systems.

- I love that he is constantly researching and staying on the cutting edge to help us fight lyme & other co-infections as effectively as possible!

- my physical exam was okay. still had tremors and some issues with my weakness in my legs and hyper reflexes (a neuro related issue). since the appointment though, as I've stabilized on these gentler abx, my tremors are so much better overall! I still have days where I'm jerking and twitching a bunch, but those days have been fewer and fewer. (yay!)

- I have one more cycle of these more mild antibiotics and then I will restart the parasite protocol, this time it's adjusted and should bring better results. I have a phone appt with him in December.

- Dr. J is also very pleased with how Spencer is doing. He wants him to continue a low dose of antibiotics every 4-5 weeks. Basically he is doing 3 days of abx a month. Dr. J explained that he typically likes patients to do maintenance abx for 2 years. So Spencer has a bit less than a year left.

- we all agreed that although having the PICC line is a pain and I don't HAVE to have it since I'm not doing IV abx, I definitely benefit from the infusions of fluids to keep me hydrated and flush out toxins. My body copes so much better with treatment. I also can't seem to absorb enough magnesium orally, so IV magnesium has been a great help to keep me from being deficient. I'm also doing IV glutathione to help me detox since my body is unable to make much glutathione on its own.

Well, my mind is drawing a blank on what else... It's taken days and days to write this. It really was a good, encouraging, productive appointment though. We're on the right track!

I've been having some really "good" days and a few really tough days. Usually after a really tough day I'll need several days to recover...pretty much bedridden for a few days. And on my good days, I'm prone to overdoing it, which also results in me needing days after to recover on the couch. It's hard finding that balance, but I sure cherish the good days. My latest victories: doing a few loads of laundry and some dishes. Seriously, I LOVE being able to help out a little with household chores. It's such a blessing to do the simple things that I was unable to do for so long!

Oh, and random, the thyroid med I've been on has been helping some with the chronic, often debilitating fatigue, but fatigue overall continues to be a huge problem for me. Our local doctor recently ordered blood work to monitor my thyroid and got the results last Friday. Things still aren't quite balanced, so she had me up the dose. Hopefully that will give me an extra boost.


Thank you again for your prayers, encouraging emails and letters. Your kindness does not go unnoticed or unappreciated. It means more to us than words can express. 

Fail!

I'm a horrible blogger. Haha, the term "blogger" doesn't even apply for folks like me.

I just sporadically write stuff that doesn't make a lot of sense.

So anyways, today I'm intentionally writing something. There is much I want to share!

But today I'm feeling like this:













I was able to get myself together enough to make it to our Bible study group last night. It is so fun and such an encouragement to have that fellowship with friends.

But I'm paying for it today. And it was so worth it :)

Here is some stuff I want to share about in the future.. So keep me accountable to actually post, okay?

☆ our trip to D.C. to see our awesome lyme doctor.

☆ how our appointments went.

☆ so now what do our treatment plans look like?

☆ does Petrova, the purple PICC line still dwell in my arm?

☆ thoughts on my 10 year "anniversary" of living with lyme.

☆ copying my wonderful sister in law's idea, a comparison of past symptoms to what's going on now.

I can't remember what else. But I'm determined to write more than ONE post in September :)

quiet morning

Woke up nauseous, sweaty, and achy with a pounding heart.
But you know what? That's okay.

I've been doing better this week.
more stamina
no seizures
weak & unsteady, but no falling
no fainting
not bedridden
able to talk more and laugh
feeling less dead and more alive

Still weary and needing to rest most of the day. Not able to leave the house except for fun stuff like blood draws (no sarcasm here. I actually think getting my blood drawn is really interesting. After so many for the past 10 years, it's no longer something to dread). Simple things like washing my face & brushing my teeth in the same bathroom trip or heating up leftovers for lunch leave me shaking & lightheaded with a racing heart. 

And I'm okay with that. It's better than last week. I have come so far in my treatment. So much to be thankful for, even during this significant "down" in the ups and downs of lyme treatment.

Time to simply rest and be still. That is a blessing. I need to view it a such, even when I have no choice in the matter. God has me here and I need to be content in this season.

So yes, although I dream of being able to do the dishes and take a shower on the same day (or even just one of those at all!) without collapsing, for now I'm resting.

And rest is a good thing.

I'm still here

Wow, all throughout the past 2 months, I have intended to post news, things I'm learning through this journey, new treatment changes, etc. That didn't quite work out for a number of reasons.

and now I'm overwhelmed. where to begin? I'm determined, though, to post something before August!

May

Overall, May was a really good month for me. The most strength and energy I have had in... literally years. (!!!!) Such a blessing! We attribute this to the two months prior that I did IV tigecycline. That drug is BRUTAL, but we see the most progress with it.

In late May, I began a new treatment protocol. It is aimed at various parasites, including Babesia. And they are all ORAL antibiotics. I'm doing this protocol all summer until my appointment with Dr. J in August.

The first round wasn't too tough - I stayed pretty functional and didn't have severe side effects or herxing. The following drug holiday was more difficult - my immune system was working hard to fight the infections on its own, so I was very fatigued. But still functional.

June

June was a much more tumultuous month and I slipped downhill from where I was in May.

The second round of the new protocol was much more difficult. I struggled a great deal on my drug holiday with severe fatigue and quite a few neurological problems started flaring. I had some pretty good days mixed in there thankfully. 

July

It has been a tough month. I'm really struggling. I've had a some "good" days that have been much enjoyed. But the "bad" days have been much worse and frequent than the "norm".

My autonomic nervous system has really taken a beating and the symptoms have been especially intense.  Seizures, severe noise sensitivity resulting in more seizures, fainting multiple times a day, falling, dizziness, severe nerve pain all over body, blurred/double vision, confusion/poor memory, droopy right eye, severe headaches daily, slurred & stuttering speech, very poor concentration, etc.

my droopy right eye over the past 2 weeks. don't mind the fact that I look like a creepy alien (or maybe Voldemort eek!) in the second photo:

It has been is a big concern of ours about whether these oral antibiotics will be adequate enough to keep me stable (and ultimately progressing) so that I don't need any more IV treatment. Dr. J has me keeping my PICC this summer "just in case." We would really appreciate it if you would join us in prayer over this.

My symptoms got distressing enough that at one point I was actually wondering in my head whether we should go to the ER - I NEVER think that. My policy has been not to go to the ER unless I'm not breathing or septic or bleeding profusely. Basically, if I'm dying. Nurses really are bad patients, haha. Thankfully Spencer has a more balanced, healthy perspective on when it's time to go. We were able to calm down that scary episode without going to the ER thankfully. We called into the clinic and Dr. J called us back, but of course we missed his call! He was out of town for the next few days, so I had a good phone chat with his P.A.. She was great!

She said that some other patients on the same protocol have also reacted strongly with intense symptom flares, especially regarding the autonomic nervous system.

The die-off causes herxing as is to be expected. But, these new drugs are killing different kinds of bacteria, parasites, etc. So the die-off reactions can be different from what I've been through thus far. Herxing from Lyme die-off has become less intense over time for me - my immune system is starting to better deal with lyme and I'm detoxing better.

But, this die-off is new. Some of these icky critters, when killed, release OTHER bugs. NEW bugs. Bugs that my immune system has never encountered most likely. So even more toxins and herxing + an immune system that is freaking out. No wonder my autonomic nervous system is rather troubled.

Anyways, I was really encouraged by what she had to say. Yes, my body is a mess right now. But it's most likely due to intense herxing from new pathogens being killed. Over time it'll most likely settle down. Feeling less worried about backsliding.

Some of my medication doses were changed to help stabilize my nervous system and I had to up my seizure meds. A bunch of tests were ordered. I'm pretty sure that most of my blood ended up in the vials and culture bottles yesterday at the lab. :)

So we'll see. I just finished a round and am feeling a bit better today. 

Meanwhile, Spencer is continuing to do a week of maintenance antibiotics every 4-5 weeks. He has been very worn out. Getting up at 5 each morning for work doesn't help! This guy needs a vacation.

I am so thankful for how HARD he works to provide for our little family, both at work and at home. He really is incredible, how tenderly and patiently he cares for me even when I am grumpy, needy, confused, difficult, etc. It's been stressful for him to see me falling apart, but he is steadfast and continues to encourage me and not let himself despair or grumble. I am BLESSED to be his bride.

Besides the fatigue, most of his symptoms, especially his headaches, are much better. We're curious about what Dr. J will say at his appointment in August. Will he be done with treatment?? What a happy day that would be! We kind of tend to think that he will need to continue with maintenance, but one can always hope.

A lot of this I've been typing for many days. I'm ready to take the plunge and actually POST  something :)

adrenaline

*I wrote most of this a couple weeks ago, but just now got my act together enough to post something :)

I mentioned a while back that my local, wonderful Dr. (we love her so much!) wanted to test my adrenal function (cortisol and DHEA levels). She wanted to check this out and work on it if the results were abnormal.

My DHEA results were fine (hoorah!). My cortisol levels, however, were not. Lyme loves attacking the adrenal glands and causing havoc. Oh Lyme... why must you be so mean and destructive?

Here's my doodle of what's going on:

Basically, I'm starting the day with a pathetic amount of cortisol. Likely another contributor to my severe, chronic fatigue. At night my cortisol levels rise instead of dropping, making it harder to fall asleep and sleep well

Thankfully we can work on these issues. I was started on a teeny tiny dose of Cortef, {which is bio-identical to cortisol}, in the morning. We're watching how I'm doing and will increase dosage if needed. At night, it was recommended that I take phosphotydle serine, which can help lower cortisol levels, thus helping with sleep. It helps brain function too, so that's a plus :)

Waiting and hoping we'll see improvement with my fatigue.

*update : we slowly increased the dosage in the morning and I'm noticing improvement! Mornings are less difficult. I can function a bit better. Thankful.

Not so in haste, my heart!

My dear grandmother lovingly sent this poem to me several years ago... literally 5 days before we found out that I had Lyme Disease. It's been on my mind as of late, amidst my frustration over the ups and downs of treatment these past couple of months.


Not so in haste, my heart! Have faith in God and wait;
although he linger long, he never comes too late.

He never cometh late; he knoweth what is best;
vex not thyself in vain; until he cometh, rest.

Until he cometh, rest, nor grudge the hours that roll;
the feet that wait for God are soonest at the goal.

Are soonest at the goal that is not gained with speed;
then hold thee still, my heart, for I shall wait his lead.

--Bradford Torrey, ca. 1875 

Ever thankful for a loving, faithful God Whose timing is perfect - far better than what I desire or think right. Thankful also for a husband who loves the Lord and encourages me to be patient and wait, reminding me that the Lord's plans will prevail, and I can rest in the sweet knowledge that His plans are for our good.
"He has made everything beautiful in its time..." Ecclesiastes 2:9

I want to view the bad days as opportunity to learn and grow, rather than grumbling about how hard things are.

"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing." James 1:2-4

Please be praying for us... I began another (and hopefully LAST) cycle of IV tyg. The next two weeks will be an adventure... so far it's been a nauseating, exhausting one. Please pray also for Spencer - not only does he have a sick wife to care for, but wrapping up the end of his semester. He's such a trooper, doing all he does, faithful to care for our family amidst such struggle. I am blessed!