Tuesday, November 25, 2014

stunned

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!

Friday, October 17, 2014

slightly hopeful

At my last appointment 2 weeks ago, we were encouraged to hear that progress HAS been made and that my PowerLine might be able to come out in a month or two depending on how the next one or two treatment rounds go. I have just finished round one and go back to the doctor in a week and a half.  I'm wondering if I'll hear the magic words, "You're ready to move on to oral antibiotics!" or if they'll want me to do one more round of IV or even more.

You have no idea how much I want to take a shower. And wash my own hair instead of having other people do it for me.  It will feel so good.  And jacuzzis!  Oh jacuzzis!  My parents have one. I'm scheduling it right now.  As soon as this PowerLine is out, I'm going over there and just sitting there for hours. :)

It feels at least like the IV thing is winding down and that is good news.

I think the main tipping point and best news of all is that for the first time in a very very long time, I had no joint pain in any joints during treatment.  That was huge!  And this last round of treatment I didn't either so that is very encouraging.

Both Dr. J and his P.A that I see agreed to give my gut a break and take me off of the vomit-inducing drugs and that helped so much this month. It was such a reprieve.  We had thought we had taken care of all of it last month but there was one pesky drug left that left me still lurching, so they switched me to a supplement that was so much gentler on my tummy.  I was so happy.

We are praying that God is using this medicine to heal me and that I will soon be ready to be a full-time wife to my husband and mommy to my kids!

Thanks for your continued prayers!

Friday, August 29, 2014

wiped to the bone

"Chemotherapy" they said.  "You're not experiencing a breakthrough because IV antibiotics for Lyme is exactly like chemotherapy.  It tears you down and wipes you out.  You won't feel better until AFTER when we build you back up."

OHHHHHH!  My regular doctor had a family emergency and couldn't see me so I had to see another practitioner in the office who consults with Dr. J. At first I was so disappointed and I thought, "My doctor knows my case history so well!", but then I was pleasantly surprised because really, the whole office is so wonderful and they all work with Dr. J and he was there that day and the practitioner I saw consulted closely with him especially because I'm an IV patient and she was well-versed in IV stuff.

I guess no one remembered to tell me that I might not get a "breakthrough" on IV treatment.  I have been waiting for one, thinking maybe around the corner of THIS or THAT month I'll be able to get up and take care of my kids instead of relying on the every day help of family members who drive to our house and get my kids up and feed them breakfast, lunch and snack until my husband gets home for dinner.  So it was actually a blessing in disguise that my doctor wasn't able to be there because to hear the words, "just like chemotherapy" helped me understand.  It's okay to feel this way.  My body is supposed to be feeling this way.

Is it fun?  No way.  Does it suck?  Yes sir and ma'am!  I can't begin to describe the suffering I am going through and the ripples it creates throughout our family and our extended family.  But we are thankful for the help and we just have to find ways to be thankful for the suffering because there is no other way to be during this time or else we'll fall into a pit of despair.  It's so easy to despair when you feel this and when it seems like there is no end in sight.

There was talk at my appointment that I MIGHT be able to get my line out in 1 or 2 months.  I remain hopeful but skeptical.  It's hard to think it will happen when I feel so awful.  But we'll see what my doctor says at my next appointment in 5 weeks.

Now I know my body is supposed to feel awful because of IV meds, but it isn't supposed to feel quite THIS awful according to blood work.  I was tested for ammonia levels and mine were quite high.  That can contribute to seizures and overall general bad yuckiness.  So I will be going on a supplement that should lower the ammonia levels and hopefully help with seizures and stuff.  They will be monitoring my blood levels for ammonia and we'll see how the supplement works.  They've had lots of luck with it in other patients so we think it will work.

Because of how bad I'm doing, I am to take a two week break from antibiotics and just focus on detoxing and resting. Then I'll resume treatment full force.  They've changed my regimen slightly to help me not throw-up so much and help my tummy not be so unsettled.  Oh, I'm so thankful.  I came into the appointment and said point blank, "I came in prepared to beg Dr. ____ to take me off of this med and this med and this med because I'm throwing up and so nauseous all the time."  The other practitioner said, "Fair enough, fair enough.  I'll ask Dr. J.  That seems fair."  I was surprised.  They DID take me off of most of the meds that seem to make me nauseated but kept me on one of the worst ones.  But I'll take a reprieve from even ONE.  Anything to make the days less sicky.  Feeling run down and hurt and awful is one thing, but then to add vomiting and nausea to it just adds a whole other suffering dimension to it that is hard to explain unless you've been there.

So the appointment as a whole went well I'd say.  I'm resting as of now and biding my time until treatment starts up again.  I wish I could say I felt well off treatment but that is just how IV works as they told me.  I'm not going to feel well yet.  And it's good to know that.

Thanks for your continued prayers for our family as we navigate this rough time!

Monday, July 7, 2014

in a state of calm

So I finished IV treatments for this round last week. Whew!  Doozy.  It was A.W.F.U.L.  I'm dreading the next round.  But for now I'm in the eye of the storm.  I'm only on oral antibiotics and have 3 more days of them until I get about a week and a half off to let my body relax a bit and then a phone appointment with my doctor to re-hash this last 4 weeks and then re-group for the next 4 weeks which might be more intense than the last.  Oh boy am I afraid.  But I need to not start getting ahead of myself and need to stay in the present.  One foot in front of the other and enjoy the little joys of each day.  My kids do provide plenty of those!

We had a fun 4th of July.  I sat back the whole time while we had family over.  They did everything - prepare food, take care of kids, provide fun.  Still, it was taxing on my body.  I had fun, I stayed mostly immobile, and while I wasn't incapacitated by seizures or nausea, fatigue and weakness were there. You can see it in my eyes:
It's a disease that's hard to explain to some people because a lot of the time we don't LOOK sick.  We look like we probably feel okay.  Unless you're there in our most utter awful moments, we look like we could be you.  But I've reached a point where I do look pretty bad.  I walk slower, shuffling at times, and I am still having seizures.  The doctor upped my seizure meds last appointment but it hasn't seemed to slow them.  They haven't increased which is good, but they haven't decreased which is kind of disappointing. I have two kinds of seizures - one, the kind where I flail (the typical kind you'd see on tv or movies), and one where I pass out for up to 3 hours--that's my record--then groggily come out of it.  Matt has to monitor my breathing and make sure I'm fine, giving me seizure meds even though I'm completely "out" (he puts them under my tongue where they dissolve very easily and absorb and go to work).  It's scary, folks, but the doctors are aware and know fully what they are doing and are keeping close tabs on me so we don't feel alone in this.

Getting fanned by a fallen palm frond by my bro
It's not hard to be off of my feet. It used to be.  It used to be hard to sit and watch and wait and see things that needed to be done.  Now I sit and am SICK and can do nothing but BE sick.  My body won't let me be anything but sick and my mind won't let me be anything but sick.  My mind is focused only on helping my body not fail completely most days.

My kids are here at home with me, but are taken care of by others.  They come over to me for loves and hugs and to say "I love you, Mama" or "We prayed you would get better last night, Mama".  It's a tag-team effort.  Right now my cousin is in town and does so much of the daily work of caring for them and for the house (Matt does a lot of the house stuff too!).  Then on top of that, I have one sister-in-law coming on Mondays, my mom coming on Tuesdays and Wednesdays, my sister coming on Thursdays, and my other sister-in-law coming on Fridays.

There's something irresistible about a little boy
and a sparkler :)  Especially MY boy :)
I've had seizures when they've been here, I've also been awake and alert when they've been here and able to direct them as to how I'd like things done or where things put.  We've been slowly moving into a new place since our move across the country so it's been a transition!  A very slow one.  Imagine a regular move and then imagine one with someone who is very very gravely ill.  It takes more than double the time to get unpacked and put away because there are just so many hiccups along the path.  Things are coming together but it really is just taking a while.  My husband is a huge help and he is trying to make our home a place of peace for me and all of our family helpers have tried to do the same when they come over on their allotted days to help.

The 4th of July was fun, and even with all of the sitting back and resting, my body still paid dearly for all of the fun I had not doing anything much at all except observing and laughing and enjoying myself NOT exerting myself.
The fireworks display as seen from our house
The day following the 4th I had a big seizure.  I always wonder, "Was it worth it?"  It usually is.  Fun with family usually is worth it.  And to keep it real, so you know that I don't always look like you or you or you, this picture was taken after a seizure - I'm not excited to share it, but I think it's important that people see that Lyme causes awful things to happen.  This is what I look like after a seizure:



Over on the right-hand side there, you'll see a fundraising site that my brother and his wife and a friend from their church have put together for us.  We thank you so much!  We just are blown away by those of you who have given to us already and so grateful!

I'll leave with this:
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12


Sunday, June 29, 2014

out of the fog of nausea

This past week was one where I didn't know which way was up and where I sucked on pineapple popsicles til my tongue hurt.  One particular IV med I was on causes severe nausea and even with multiple anti-nausea meds, the nausea was barely contained all week.  It was miserable, awful, sorrowful, pitiable...

But then this:

"the God who equipped me with strength and made my way blameless.  He made my feet like the feet of a deer and set me secure on the heights.  He trains my hands for war, so that my harms can bend a bow of bronze.  You have given me the shield of your salvation, and your right hand supported me. And your gentleness made me great.  You gave a wide place for my steps under me, and my feet did not slip." Psalm 18:32-36

and this:

"Now may our Lord Jesus Christ himself, and God our Father, who loved us and gave us eternal comfort and good hope through grace, comfort your hearts and establish them in every good work and word." 2 Thessalonians 2:16-17

And look as this gem my aunt found.  So fitting right now and I'll leave it at that since I'm pretty weak still:

"The highest result of prayer is not deliverance from evil, or the securing of some coveted thing, but knowledge of God… “And this is life eternal, that they should know Thee, the only true God"(John 17:3)…" --from The Kneeling Christian