One step forward, 10 steps back

I am going to try and type this even though it's 2:15am in the morning.  Crazy that I am awake huh? :0P Well, this week has been extremely rough and I had to change how I ran my IVs.  The drug that I am currently infusing (the last one for this week thank goodness) has to be infused 7 hours a part.  So, I do one in the morning, but then I save the rest until I am not alone which ends up being after Brian gets home.  That leaves me to have to do my final Flagyl at 2:00am.  Insane I know, but the good thing is, I have already been asleep for awhile and I just set my alarm, do the 30 minute infusion and then go back to bed (that's if there are no complications, which unfortunately I can't say that has been the case every night).  Here's to hoping that tonight I won't have any problems.

So, I am guessing you would like an update. :)  I am going to put a link to my blog post last week so that you can read about some good things that happened.  In fact, last week's post was full of positives.  Kind of nice for a change!  So, if you didn't read it, here is the link : Celebrating Baby Steps. 

Now onto this week, which took a drastic turn for the worst.  I feel like it's important to be honest with you and share about our struggles. I am hoping that I don't discourage you, but that I give you a realistic picture of the life of a "Lymie" in treatment. It's a lot of ups and downs and one step forward and 10 step backwards.  Not exactly fun and definitely does a number on the emotions.

Monday, Brian took me to Phoenix.  It was a last minute change of plans, and his work was awesome to let him fill in.  We had some issues to discuss with the doctor as over the weekend some not-so-fun things started surfacing.  We think it's my autonomic nervous system getting trigger happy because the bugs are being fought big time.  I was experiencing drastic temperature change issues where one minute I was freezing and the next minute hot, still losing weight even though I was trying to up my calorie intake (I would eat my dinner and 15 minutes later I would be starving) and I had adrenaline just coursing through my body like I was permanently hooked up to an IV line of caffeine.  Add that to the other symptoms of joint pain, severe headaches and head pressure and it was very unpleasant.  We asked my doctor to do a thyroid test just to make sure that with all the weight I have lost, that I hadn't switched into hyperthyroidism (I have lost a ton of hair too), but we got the results on Tuesday and everything was normal.  So, unfortunately, it's the Lyme bugs getting angry or that is how we say it around our house.  After this week, I would say those Lyme bugs have been throwing a freaking temper tantrum. :0P

Running my IVs has been very challenging this week as I have been pretty reactive.  I have experienced random flushing, itchiness, throat tightness and fluid retention.  It's all due to a dysfunctional autonomic nervous system as it comes in waves which tells us it's not an allergy to the meds, but it can get downright scary at times.  There have been two times this week where I almost reached the point where I thought we needed to go to the ER, but since that always causes more harm than good, I fight with everything I have not to get to that point.  Tonight was probably the scariest with my Azithromycin, but I slowed the IV WAY down and was able to make it through with a lot of assistance from other drugs and the Lord.  I have to say that God knew something was happening and it was comforting to be reminded that He is watching out for me.  I know that, but sometimes in the heat of the moment, it's good to be told that.  I got a random text from a friend who said she just felt the Lord lay me on her heart all evening and had been praying.  What a blessing!  We really needed it big time with this infusion, and it was such a comfort to know that God was on the job. :)

As a whole, my  (herx reaction to the meds) have really exploded this past week.  There have been times where I have been so nauseous that I have almost thrown up (I do everything I can to avoid it...have done that since I was little, lol), TIMES where the room won't stop spinning, TIMES where I feel like I am breathing through a straw (it's not asthma, so there is no remedy but time) caused by the bacteria being fought and affecting the amount of oxygen in my red blood cells (called "air hunger"), TIMES where my heart rate is high and my blood pressure is low, TIMES where the head pressure and headaches are so bad that sitting up is hard to do, TIMES where I am so exhausted that even going to the other room to get a drink of water looks like a big obstacle, TIMES where I have so much joint pain that walking is painful, TIMES where all I want to do is cry and give up because everything is just plain overwhelming and I am tired of feeling like I drank 20 cans of JOLT and that my body has decided to run a marathon without my permission, TIMES where I wonder if we are on the right track with treatment as there are so many different ways to treat this disease, and TIMES where I just feel frustrated and tired of this fight even though we are only on our third month of IV treatment. 

Well, that is an honest picture of our week.  It's during these TIMES that I have to purposely have had to remember the attributes of God and that no matter how things are or look, He is sovereign, in control, faithful, gracious, kind, loving and our provider.  I have been reading a lot in the Psalms especially Psalm 100-111.  There are so many great promises in those passages...I'll list some passages that have specifically spoke to my heart.

Psalm 103:1-5
"Praise the Lord, O my soul; all my inmost being, praise his holy name.  Praise the Lord, O my soul, and forget not all his benefits - who forgives all your sins and HEALS ALL your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's."

Psalm 105:4
"Look to the Lord and his strength; seek his face always"

Psalm 111:7-8
"The works of his hands are faithful and just; all his precepts are trustworthy.  They are steadfast for ever and ever done in faithfulness and uprightness."

We haven't had a very fun or celebratory week, but as Christians, sometimes, we have to celebrate even when circumstances do not point us in that direction.  God is OUR strength and OUR portion forever. He is our Emmanuel and it's in Him that we can place our trust.

I know this post is long, but I want to list out some prayer request....

• Please be praying that my reactions and treatment side effects would calm down.  My body seems to have a mind of it's own these days and I am miserable.  I really need me to be able to tolerate these drugs as long as possible in order for me to have the best chance of killing the Lyme bugs.  So, I have to persevere.  Please pray for God's protection and for a peace and comfort that only comes from Him.
• Please be praying that I will stop losing weight.  This issue is a battle as almost everything I would eat that would help me gain weight feeds the bad bacteria in your body that often grows when too much of the good bacteria is killed off by the antibiotics.  It is really challenging with my food allergies and sensitivities and we have yet to find a solution.  Meanwhile, I keep going down in clothing sizes and I'm running out of things that fit! 
• Please pray that God would continue to provide physically and financially.  My insurance company is starting to throw a fit about things.  We are hoping it's just because throughout the month of October, some wrong codes were used on my invoices, but at the same time, they seem to be analyzing everything with a microscope and where they were paying 50% consistently for September, they are now very inconsistent and hardly paying at all.  We are going to be going through the appeal process, but when I feel so sick, writing letters and providing documentation looks like an exhausting mountain climb.  Plus, we are not sure how long I will have to do IV treatment at this point our financial resources are dwindling at a fast rate. God is really going to have to come through in mighty ways and so we have yet another opportunity to trust that God will make the impossible possible.
• Please be praying for emotional strength and clarity in decisions that we have to make in regards to my treatment.
• Finally, please pray for my wonderful husband.  He has been amazing this week...so patient, kind and caring.  Always making sure I am okay and willing to sacrifice his own time for me and taking care of household duties.  However, he has a HUGE exam coming up on November 19th.  He will be taking the first big section of the CPA exam.  He has been studying when he can, but this week has kind of been less than accommodating when it comes to free time.  Please pray that God would multiply his study time the next two weeks. I am so proud of Him and know that he will do a great job.  It's just that life is hard right now, and it's not always easy to get the things done that need to be done. 

Well, that is all for now.  Boy was this post long. I am sorry about that!  My IV is done, and I need to get to bed.  Thank you so much for praying and supporting us.  We have been overwhelmed with the blessings that God has given us through people we know and do not know.  We are going to make it! God is going to bring us through, but we just might have the battle scars to prove it. :)  However, this is God's current path for us and we wouldn't want to be anywhere else.  Blessings to you my friends!