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.