Friday, May 30, 2014

IV'ed

Wow.  I've nearly added one week of IV antibiotics under my belt and I've been womped pretty hard.  I'm taking oral antibiotics congruently so that doesn't help how I feel either, but WOW.  IV is a whole other ballgame.

My eyes are sunken, I can barely walk, I'll think of something I want that is just out of reach and then decide to just wait because it's too much energy to sit up and reach for it - whew!  This stuff is potent; and that's good!  But I hate it at the same time.

So some people name their IV line.  It helps them through it or something.  I thought I wouldn't, but then a name popped into my head and it fit perfectly and it bonded me to my line and made me LIKE it more than I ever would and endeared it more because I have sort of been scared of it this whole time.  I shall name it Violet.  It's purple so it fits. It may sound silly to most of you, but to those of you who have had PICC lines or PowerLines or Ports to receive antibiotics, you know how much it helps to have that name that makes you love the thing that is helping you get well. I'm not batty.  I'm crazy, but not batty, all you friends out there.  Don't worry, I haven't crossed over.
The procedure itself was not what I expected.  "Conscious sedation" was something altogether different than what I imagined.  I was very much aware of everything they were doing when inserting the line.  But I was sedate.  So there you go.  Just what it says - conscious but sedate.  Then off to the clinic we sped to make our appointment to learn how to change the dressing and also test dose the medications and lo and behold all of this was just too much on my poor body and I ended up having a mega seizure right there on the exam table.  Passed out and everything.  My husband said they got really worried, but after some very special medication was pushed into my line, (and after I had already maxed out on my regular seizure meds), I came to and things got normal again and calm.  Scary times.  Seizures are never normal for us and never not scary. But the rest of the weekend we spent in DC went fine as I recovered from the procedure and Matt is prepared to be my nurse.  Interestingly enough, 2 nurses I had in pre-op had Lyme disease and my surgeon had Lyme disease 13 years ago and said, "We're rooting for ya!".  It's prevalent, folks!  It really is!

Life is hard hard hard right now.  We are still in-between houses.  We finally closed escrow and are painting our new house.  "We" is my husband and my siblings (SO thankful for them!). I sit and watch.  My mom and dad babysit our kids.  We are so grateful for everyone helping.  Once the painting is done (maybe this weekend?) we can move our stuff in and finally be done with our very haphazard living situation we're in.  Things will calm down.

And I get help!!  My aunt is sending my very mature nearly college age cousin to come stay for a couple months to help with the kids.  We are so blessed and God is taking care of us.  And we have help from my sister who will come once a week to relieve my cousin, and help from my two of my sister-in-laws, and my mom gets to come for 2 days a week and offers from many others.  I will say yes to whoever I can that will be helpful and not harmful to my health.  We need any help we can take at this point.

My dad accompanied me to my son's well check appointment which helped immensely. I couldn't have done it by myself.  I can barely walk for goodness sake!  He carried my son and did everything that needed to be done for my son (my son LOVES his Appah!). I had the worst memory problems there filling out the forms, but made it through so I'm so glad I didn't have to wrangle a child AND fill out forms.

God's grace and goodness are abounding through this trial and we pray and hope that these IV meds are what will get me back into perfect health!  Thank you for praying for me!

Friday, May 2, 2014

ready

It's taken me a bit to digest the information I got at my last appointment. I was in bad shape. Afternoons are really bad for me.  Mornings are good. I sometimes have a pep in my step even!  Then as the day wears on I sink lower and lower and lower until I'm reduced to shuffling along (if I can walk at all). I can barely manage a smile.

Lately, though, through tough news, I'm thankful for the late night laughs my husband and I have had.  They've been much needed.  Laughs about ridiculous things. I think we both just are punch drunk and delirious with overwhelmed crazy information overload that things that normally wouldn't be funny become hilarious to us and we lay on the bed laughing til we cry. Thank you, Lord.  Laughter really is the best medicine.

But back to my appointment.  I was thankful in a way, that my appointment was in the afternoon, because then the doctor could see me at my worst.  Not that they don't take me seriously; in fact, they are the kindest doctors I've ever encountered.  They believe every word I say because they've seen it in countless patients and they fight for us.  Another huge blessing and thing I'm thankful for - doctors who fight for a chronic disease that most doctors gloss over or decide doesn't exist.

See me at my worst they did.  It was meant only for my main doctor to see me but the big guns had to be brought in. She brought in Dr. J.  They conferred.  We discussed.  I was laid on the exam table because of all the shaking that was happening in my body ("we don't want you to have a seizure") and the lights were dimmed.  I had to lay there for an hour and a half before I was cleared to leave.  I was actually fine with this.  I was so so so fatigued and worn that my body needed that dark room and table to recline on.

Before the exam table we discussed things.  We discussed the last 4 months; symptoms and such.  I had
trouble getting words out.  She could tell I was having trouble.  When she "poked and prodded" me (her words) as per the usual exam, my body did all sorts of weird things I couldn't control.

My body is not mine - it's Lyme's.  Clearly I'm not winning this war.  If ever I was, I'm not anymore.  And after very careful thought and deliberation it was decided that I need to go on I.V antibiotics.  Funny enough, in office, I was so very calm about this decision.  I was pumped up about it.  I was happy.  Yes, a single, sad tear slipped down my cheek as she said the words "I.V treatment".  The lights were dimmed so I don't know if Doctor saw it.  But overall, I knew this is probably what my body needs to get over the hump of not being able to get better.  Dr. J came in to discuss it with me too and we both agreed - I'm TIRED of being sick!  This is what is needed, no doubt about it.

It WILL be rough.  Rough in so many aspects, not just on my body but on the family, on the finances, on those around me who have offered to help.  Lyme affects so many without people realizing it.

But here are the truths - the things that make me sit up straighter and breathe easier when I'm up late at night fretting:

-I.V wasn't mentioned until we moved to where we are surrounded by family of all different kinds - parents, siblings, etc.  We have a great support network.  Even friends have offered help.  People we hardly know have offered help!  God's hand in timing this is so evident.

-All money is God's.  It's all His.  So why do we worry?  He will provide for our needs.  Doesn't mean it won't be slim and hard, but we need not worry for He cares for us.

-God will be with me through the toughest parts of treatment.  He's been with me through the toughest parts of oral antibiotic treatment and He won't abandon me now.  The scary thoughts of "what if" and "what is it going to be like" dim when I dwell on His presence.

-We already have offers to help take care of the kids that should span the hours of my husband's work schedule so that I won't be left alone with them (seeing as I have fainting spells and seizures at any given moment....something the doctor is working hard to remedy before I start I.V, but things change with new I.V drugs so we'll see!).

So, all of this is set to start in a few weeks!  It is all happening very quickly and moving at such a fast pace that I can hardly contain my thoughts sometimes.  But prayer and snippets of God's Word helps.  It's hard for my brain to be able to sit down and read large passages of any kind of book, but I do find it comforting to go to the Psalms.  They seem to be the perfect length for an overworked/overrun-with-Lyme brain.

"I will rejoice and be glad in Your loving kindness, because You have seen my affliction; You have known the troubles of my soul, and You have not given me over into the hand of the enemy; You have set my feet in a large place." Psalm 31:7-8
The clouds on the flight home