Thursday, February 23, 2012

composed

So this week I started meds again after three weeks of being off of them.  That is the longest I've been without the medicine since I started this whole thing in 2010.  I did so so well on those three weeks and didn't ever plateau.  Good sign my body is finally learning how to deal with those spirochetes!  But the real test was going to be going back ON the meds.  If I crashed hard, it probably meant that three weeks was too long and that I might not be as far along as we'd like (moving toward a "maintenance regime").  So with trepidation I embarked on Monday with the first handful of pills.

I felt weary.  My daughter caught the nasty flu that is going around (fever, chills, aches, etc) and at the same time started HER first treatment for her Lyme disease.

Tuesday came and again, down the hatch went the pills and by late afternoon I was stuck on the couch.  I was getting pretty discouraged.  Not to mention that my little girl was healing from the flu AND fighting spirochetes.  It was hard to tell what was flu and what was possibly herxing.  My mama bear heart doesn't like to see her in what could be, in a lesser degree, pain and lack of energy that I've felt.  On top of that, we were in talks with her doctor all day because she had an "adverse reaction" to one of the drugs.  We discontinued it and are waiting to see if the mean patches of hives goes away (and it is decreasing...cuplrit: Septra).

By the end of the day I was feeling awful and discouraged over my little girl and over my seemingly bad response to meds and how I must not be as far along as I thought.  I prayed.  I prayed that "tomorrow You will give me the grace to face the day".  I pray it every morning when I get up....especially when I feel overwhelmed at the prospect of caring for the kids and feeling yuck all day.

And when I woke up the next day and sat up, it was hard to tell what would happen next.  I went about our morning routine, swallowed my pills, and guess what?  I had renewed energy.  Yes, I could feel some herxing going on (air hunger, etc), but my energy was so that I dusted the whole house (at my own slow pace), did 4 loads of laundry and folded and put them away, and cleaned one (out of 3) bathrooms. All that WHILE caring for the kiddos.

This is a new thing for me.  I've never in the middle of treatment been able to just go about the day doing MORE than I usually do. Praise God that it looks like my body is getting the upper hand with this disease!

This morning I woke and again have *enough* energy to care for the kids, etc.  I added a real killer of a drug to my regimen (well, the doctor did) today and I'm anxious to see if I herx.

My daughter has perked up a lot and is playing pretty normally, and she just said, "Mom?  Are you going to dust today?"  This is the same girl who thinks dads cook dinner in every family.  She noticed it was different than my usual "on" week.

So yay!

Thursday, February 16, 2012

encouraged

Obviously with Lyme there could be backsliding, but we are noticing that the "downs" are not as severe as before and the "ups" are quite incredible!  Thank you, Lord!  And thanks for all your prayers and continued prayers for healing!!

Wednesday, February 15, 2012

like an expert

I was thinking recently about how much more "comfortable" (if that word can be used with Lyme Disease) I am with things I was SO not comfortable with in the beginning of my illness.  Now that I'm nearly on the other side (praise God!), it brought me a chuckle the things I just matter-of-factly roll with now.  I have become:

-an "expert" at swallowing 4 pills at a time (instead of just one and gagging)


-an "expert" at dolling out 160 pills per week into a weekly pill case


-friends with my pharmacists (they've chased me down in the middle of the store to tell me I forgot to pick up a prescription and they recognize my voice on the phone now.)


-friends with my phlebotomist 


-an "expert" at knowing which vein will be the best on blood draw days


-a "poop" expert (take that however you'd like but Lymies will probably understand)


-a pain "expert" 


-a "Lyme-explainer-in-one-minute" expert


-a "symptom antenna"


- a more patient person


-a more grateful person


-a better pray-er

What things have you all become "experts" at during your illness?

Saturday, February 4, 2012

ponder-ful

....if that is a word (which it isn't) :)

We got back from D.C last night and brought with us the news that yes, our daughter has Lyme disease.  But instead of being disheartened and discouraged, we have been choosing to look at all the great ways we feel cared for by God in the process of getting her diagnosed.

I cannot say enough how much we love and respect Dr. J and his staff.  I really was fighting a losing battle when I went to his clinic the first time  and now, a year and a half later, I am nearly ready for "maintenance" meds (where basically I'll feel normal and healthy and just do meds once a month to keep reminding my immune system to do its job); I feel like I'm on the winning side of the long battle with Lyme! We are do indebted to them and have always felt so comfortable with their treatment plan.  It's tried and true and we love how on top of research Dr. J is and how willing they are to work with little concerns we have about certain drugs or certain treatment ideas.

And now that they have started to accept young pediatric patients, my apprehension about them being able to treat little ones has been assuaged completely as we have learned that their pediatric P.A (who works directly with Dr. J) was sent to train with Dr. Charles Ray Jones.  Oh my!  He is THE best pediatric Lyme specialist in the world.  So now we basically have input from two of the best Lyme doctors in the care of our daughter.

Their treatment plan and evaluation of Georgie put us so at ease and I don't feel like I'll be overloading my daughter with drugs.  They explained EVERYTHING so it all made sense and they made her feel comfortable as well.

I am confident that our daughter will be getting the highest care and will be healed just as I have been and continue to be.

Thank you, Lord!  And thank you all for praying for us!  If you have any questions, please email me!  I'll update more about my appointment later.