Monday, January 4, 2016


I'm here guys.  I know it's been 8 months.  I did get my line out. I did take a shower (only to find out our hot water heater was really old and only held hot water for 5 minutes -- so my husband gifted me a new one and I took a very long HOT shower).  I did take a jacuzzi.  I did swim in a pool.

It's been 8 months.  The line came out.  It's been hard...still.  Maybe I expected it to be easier like *poof* - your line is out - you are a jump higher on the mountain climb of Lyme&Co? But it is still a bumpy mountain bike trail that hits rocks and divets and goes deeply down and up up up and then down again.

It's been hard. It's not just Lyme I have to contend with so that makes it all the more hard. Life and Lyme - how do people get better I wonder sometimes? But my doctor is committed. Won't give up. In it for the long haul.  Despite being beaten up by the IDSA - they trudge on because of patients like me and you because they see us getting better even if it is little by little.  They are trained to see the sunshine as the coal dust settles and they see it and it's what keeps my doctor and staff going and for that I can be grateful!

Anyway. I haven't been up much for writing.  But I'm here and much has been going on in my Lyme world. And maybe someday I will write about it. And maybe today writing something means I'm a little more open to sharing more and more. Hope you all are soldiering on no matter what ails you! ((hugs))

Monday, April 20, 2015

like it's coming out

This is the week that Lord willing my PowerLine will be coming out.  Just a couple more Lactated Ringer's solution drips through the line and then it'll be bye-bye. It's been about a year since it's been in and it did help me a lot. Of course I'm still working hard to get well, but going through IV was a big push in the right direction.

Thursday, March 26, 2015


Lyme disease is often misdiagnosed as Chronic Fatigue Syndrome, Fibromyalgia, MS, Parkinson's, ALS, and more. I was misdiagnosed for several years. Both of my girls were treated and now are symptom free. It's so important to rule out Lyme with a specialist if you've received any of the above diagnoses. These pictures were part of the Lyme Disease Challenge and you may have seen ones like them going around lately. 

My last appointment in DC went well.  I'm making slow and steady progress with fewer seizures and we're trying to get down to the bottom of my energy issues. For this next two rounds of treatment we are trying new things to figure out if there are underlying causes and I've had lab work drawn once again to see if anything can be figured out besides "THIS IS LYME" and this disease is terrible.  But really, in the end, one day, I will be my normal self again and that is the hope.  And energy should be returned to its full strength to be considered normal in my book.

I'm still without joint pain which is wonderful! I'm so so thankful that the Lord has seen fit to keep that away.  I may have kicked it for good.  I think the best news from the appointment was that at the end of April I will get to have my line removed! Yipee :)  Showers and jacuzzis and beaches and swimming are in my summer future! 

While things are looking up, life is still quite hard as it is difficult to function on very low energy reserves. So pray that the Lord would strengthen me and that the doctors would find answers as to how to remedy that.  And as you can imagine, life doesn't stop when you have three children, especially small ones!

Lord, I'm drowning
In a sea of perplexity.
Waves of confusion
Crash over me.
I'm too weak
To shout for help.
Either quiet the waves
Or lift me above them--
It's too late
To learn to swim.
-Ruth Harms Calkin

But I continue to try to stay prepared daily for each "crisis" through prayer and through His Word, for only those things will get you through to the end.  And I know He still is doing what He has planned for me even though it's hurting like heck.

"He knows the way I take; when He has tried me, I shall come forth as gold. My foot has held fast to His path; I have kept His way and not turned aside. I have not departed from the command of His lips; i have treasured the words of His mouth more than my necessary food. But he is unique and who can turn Him? And what His soul desires, that He does. He performs what is appointed for me." - Job 23:10-14

Wednesday, February 11, 2015


It's been a while.  But the good news is, I'm no longer on IV antibiotics!  I've graduated to orals.  I've still got my trusty line in, though and I'm using it for Lactated Ringer's solution to help flush out and detoxify.

I already have a month of oral antibiotics under my belt and I'm underway with my second month.  And like a stalled car just trying to start I feel like I'm screaming at my immune system to please kick in and start!  Please! Please! Remember your job - start up again - do what you're supposed to be doing!

I'm quite worn out all the time and can function minimally, but I have just come out of the battle as my husband reminds me.  It's early to start expecting me to bounce up and be perky with vigor.  But I've got to say I'm frustrated. I'm so frustrated and downtrodden. This is such a sucking vortex of a disease that brings you down down down into a pit of despair if you don't watch out for it and I've got sucked into it because I wasn't careful to guard my heart.

It's been 4 years since I was diagnosed, but it was 8 years since I was debilitated by the disease and longer since I've had symptoms.  Eight years is a long time to be really sick and nearly non-functioning most of the time with various stages of people and friends who do and don't understand what you're going through with opinions flaring and such.  Downtrodden.

But there's lots to be thankful for!  There have been many who have been so supportive!  My family for one!  Most of our close friends in the previous states we've lived in - they did so much in acting as family since our family couldn't be there.  They truly were the body of Christ and we are so thankful for that.

I'm thankful my second daughter is (with a tentative voice) Lyme-free. That has been a very long road filled with triumphs and setbacks and heartache and someday I may tell her whole story because I know it may encourage others with parents who have children with Lyme.  We have no kids with Lyme disease now.  Praise the Lord.

It's just me now.  I need to heal.  Why can't I heal faster?  More like, why can't I be patient?  Isn't 8 years patient enough?  I hate this disease.  Coming in to see a doctor after being so so sick for 4 years for sure means it's going to take a bit longer to heal than your average person.  I know that.  My husband and I just wish we could finally be done with this disease once and for all.  We see the success stories and know it will happen.  But Lord, when will it happen for ME?

Tuesday, November 25, 2014


Like a one-two punch hit me in the gut.  But maybe I'm being too dramatic and I should just get over it.  In fact, I almost expected it.  Today was my phone appointment with my doctor.  Last month's first week of treatment was pretty rough on me.  Lots of almost-seizures that were saved with medication and a few seizures that slipped on through.  The second week was much better and I am improving in energy, but my "off" weeks are still lagging a bit and what was explained to me today is that in order to "graduate" to oral antibiotics, they really want to see two consecutive months of "good" off weeks.

I'm not there yet.  Not there, almost there, but - NOT there. In fact, I'm so-close-but-not-quite-there that I have to do ANOTHER month of IV.  Dr. J misinformed us last appointment that I was done.  OH how sad I am.  THAT is why I feel a bit sucker-punched.
More time to infuse are in my future.

BUT, in another way, I am SO thankful that we are treating this ALL the way. I don't want to prematurely end fighting this disease the way it should be fought.  I want to get every last ounce of fight out of this PowerLine that I can if it will help.  I trust my doctor; she is so attentive to detail and spent such a long time on the phone with me today going over really minute details to help paint a bigger picture that would form her opinion and base her treatment plan for me.  It all makes sense.  It might feel sucky, but it makes sense.  And she said she is so so hopeful that this IS the last month of IV and that when I see her in January we can move on to oral antibiotics.  That is our prayer.   But I've got to say, getting the news just made the tone in my voice for the rest of our appointment change and get more down and out.

Did I grieve?  Yes? (I might still be grieving a bit)

But will the Lord sustain us through this and however much longer we have to go through IV antibiotics?  Yes.  The first thing I did after I got off the phone was fall over on the bed and pray.  "Lord, please provide for us.  Please sustain me." And then I cried.  It's tough to go through these rounds of IV as you've heard me describe.  I'm not looking forward to Monday.  But I'm thankful for the rest of this week that I have off.  And I'll try to keep looking for the things I can be grateful for throughout the rest of the week.

"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 40:31

Friday, November 14, 2014

Like the end

I had my final antibiotic infusion last night. It has come to an end. The last two weeks of antibiotics have been so rough.  SO rough.  The first was wrought with many seizures and listless moments and two days of lying helpless in bed needing to be brought every meal and every cup of water.  I slept most of those two days or watched Netflix if my head didn't hurt at the moment.  I'm thankful for my loving husband for caring for the kids and keeping them away so as not to incite a seizure. He knew just how to care for me on those most trying days.

The second week was better in some ways because there weren't seizures, but there were other evils coursing through my body.  The IV drugs had changed and so the side effects had changed and the herxing had changed. I was running a marathon to get to the finish line. My husband kept saying, "Just 8 more infusions....", "Just 6 more....", etc.  It felt like I was swimming the English Channel. My body was so worn out. The infusions were taking their toll and hopefully killing lots of bugs and doing their worst since this is the last time we can hit them with the really strong stuff!

Finally the last day arrived.  Thursday.  Two infusions to go - morning and evening.  Our schedule was to wake up at 6:30am since my husband helps me get it started and he has to get to work. By 8:30am the infusions are done. And I'm done-in.  But I've got kids to feed.  Thankfully my sister comes that day to help and arrived not to long after I had gotten a simple breakfast prepared so I could just plop on the couch.

I was desperately out of a medicine that I needed that evening so I had to run to the pharmacy but I had no motivation or energy to do it.  My sister offered to go for me, but I had to sort out certain other medications I had to get so I really had to go.  I put it off as long as I could and then finally just went, but upon getting there realized that the Target pharmacy might be closing for lunch and I didn't want to have to kill time for 30 minutes. I had 3 minutes before what I thought would be closing time. So I spent energy I didn't have doing the best sprint a person who has no energy could do and high-tailed it up to the pharmacy line. I made it in time!  But paid the price in my poor body's energy reserve. 

Got my meds, spent, utterly exhausted - and it hit me - I had ONE more infusion to go.  ONE more antibiotic infusion to go.  I teared up and decided I deserved a celebration drink - Starbucks was on the way out of the store so I stopped for my favorite drink - a decaf Americano.  I could hardly get my order out through the lump in my throat.

All the way to the car I could feel the hot tears in my eyes. Six months of grueling misery and hard work to get to the point where here I COULD make a pharmacy trip on my own and walk without having to sit forever.  I definitely have made progress.  I still have not had joint pain.  This is the third month without it.  Praise God!  And my energy levels are up.  While not to the point where I am "normal", they are so much better than when I began this IV journey.  I'm ready for the "rebuilding" phase with oral antibiotics.  I'm ready to get stronger and get back to my normal healthy self!

I sat in the car for a minute and sipped my drink and cried a bit.  I dreaded my last infusion because they are no fun.  But I knew that it was just ONE more and then I was done.  ONE more.  I could make it with the Lord's help. "I can do all things through him who strengthens me." Phil. 4:13 I think I cried not only because of what lie ahead but because of all that lay before.  My sweet sister-in-law who is suffering from the same insidious disease and who herself is on IV treatment right now sent me a sweet reminder of God's sovereignty. It goes like this:

"Reader, if God has given you His only begotten Son, beware of doubting His kindness and love, in any painful providence of your daily life! Never allow yourself to think hard thoughts of God.  Never suppose that He can give you anything which is not really for your good. Remember the words of Paul: 'He who spared not His own Son-but delivered Him up for us all, how shall He not with Him also freely give us all things;' (Romans 8:32)

See in every sorrow and trouble of your earthly pilgrimage-the hand of Him who gave Christ to die for your sins! That hand can never smite you-except in love! He who gave His only begotten Son for you, will never withhold anything from you which is really for your good. Lean back on this thought and be content. Say to yourself in the darkest hour of trial, 'This also is ordered by Him who gave Christ to die for my sins. It cannot be wrong. It is done in love. It must be well.'" - J.C. Ryle

That sums it up pretty well. Even though this is hard and will still be hard ahead, God has ordered it and it cannot be wrong.  It's done in love and I can learn from it.  If I resist, it's futile to my benefit in learning.

So while it's not the end of Lyme, it is a cause of celebration and praise to the Lord that it's the end of "violet" the PowerLine (for antibiotics - I'm keeping it for a few more months for fluids).  

I went home, got ready mentally, and the time came.  The kids went to bed, and I hooked up to my LAST antibiotic IV.

 It was yucky, awful, terrible.  When the two hours are up I can barely move. I passed the time by watching one of my favorite shows - The Incredible Dr. Pol and by cuddling with our new kitten who
adores me to death (I needed a therapy animal and somehow she knew it).  When it was finished my husband asked, "Is there anything I can get you?". I could barely nod my head no.  I just wanted to get into bed and sleep it all off.  I lay there forever and let my eyes close.  My husband got me some water to take my night time meds and helped me to bed.

This chapter is closed.  Thank you, Lord for sustaining me.  

Thursday, October 30, 2014

blue sky-ey

We just got back from our monthly trip to see my doctor and we had been praying for good news.  There was a slight scheduling conflict that we weren't informed of until about 2 minutes before we met with the doctor, though!  Instead of meeting with my usual practitioner, we met with Dr. J.  This is not a BAD thing at all.  I am a creature of habit somewhat, especially when it comes to doctors and I love that my practitioner knows my chart and knows me, but I know she works so very closely with Dr. J, and he often stops in to say hi and see how I am doing.  So the change wasn't bad like I said.  Just surprising.  They said my practitioner wasn't in on Tuesdays.  Well, why, then did they schedule me on a Tuesday a month ago if they knew she wouldn't be in??? Oh, front desk!  Oh well, it's really doesn't matter, because my appointment went well and in a lot of ways it was great that we got to meet with Dr. J, because we got to discuss some things with him that we keep forgetting to bring up otherwise.  He's a very patient man and explains things very well both to me and to Matt.

My last month went well; really well, in fact. It was the second month without joint pain which is fantastic and this month I had a noted increase in energy.  Not enough to the point where I could care for the kiddos on my own each day for a whole day, but enough where I wasn't in bed or couch bound and was able to perform more tasks than I was able to even just one month ago.  Both Matt and I have seen a big leap in this.  Dr. J calls them "blue sky days" and asked about how many of them I had this month.  I really couldn't estimate how many as they seemed to be in spurts or moments each day instead of whole days at a time, but they were there!  Blue sky moments!  He was greatly encouraged as were we and he was enough encouraged to say that one more month of IV drugs will be it for me and then it will be on to the oral antibiotic phase. Yipee!

My next IV month will look exactly the same as last month so that means my tummy will be much settled (so thankful), and I'll probably just be worn out a lot and maybe have some headaches (but Dr. J had an idea of how to combat that and thought it may be a toxic thing going on on the brain causing them, so we'll take care of that).  I'll have a phone consult in a month and after discussing it with the doctor, I will not have my line taken out until February.  Even though I won't be using it for IV antibiotics, I will be using it for Lactated Ringer's solution which are super beneficial for flushing out toxins. I think it's basically just sodium chloride, sodium lactate, potassium chloride and calcium chloride in a fluid bag that hooks into my line - in short - electrolytes - the stuff they hook you up to when you get checked into the hospital.

So my excitement of taking a shower and a jacuzzi and whatnot...well, it'll have to wait.  I understand the benefits and I can be patient for my health.

We are so excited that this is the last IV antibiotic month and are so thankful for answered prayers about that. Thank you for praying for us and please continue to do so!  I'm not well yet and need your continued support through prayer.  We are encouraged, though, so be encouraged, too!  We wanted to share the good news!