Tuesday, August 20, 2013

Update on Andrew

I realized I shared this on my own page but not on here.  We had an appointment with Andrew's orthopedic doctor last Tuesday (he broke his leg a few months ago) and here is the report:

"This picture was taken less than 5 months ago when my sweet boy broke both his tibia and his fibula in a sledding accident. We went to his last orthopedic appointment this morning and his doctor was THRILLED with how great his leg looked. Looking at the xray, he said that his leg is "straight perfect" and he wants to print off Andrew's xray to show to other people how a perfectly healed leg looks. He expected it to get back to normal, but he originally thought it could take around 2 years. AMAZING! I am so happy, and in awe of how God created our bodies to heal!"

Monday, August 19, 2013

Roller Coaster

Lyme is a roller coaster.

I spent the first 2 years that I had Lyme in pretty good shape.  It interfered with my life more than I liked, but it didn't stop my life.  And then my life stopped.  For the past 16 months or so, I've been more or less a hermit, mostly only leaving the house to go to the grocery store (sometimes, when I am able) and the never-ending doctor's appointments.  No playdates with friends, no church on Sundays, no homeschool co-ops, and no family gatherings.  I'm so thankful that we have had such wonderful family and friends to help us through this time, bringing us groceries and medications, doing our laundry, and helping with our kids.

In the past month or so, I have started to feel better.  Last week I was flying high.  After a year and a half of sleeping at least 12 hours out of 24, including a nap almost every single day, I was able to go back to sleeping 8 hours at night and not a single nap all week!  I also used to wake up in moderate to severe pain every day, and I woke up with no to mild pain every day last week.  I was even able FINALLY to put in some time cleaning up and organizing the basement (yes, it was 7 months ago that it flooded...) and getting some things out to the garage to get ready for our garage sale.

Friday night I started to get bad.  Saturday was worse with a lot of pain and fatigue all day.  Then yesterday (Sunday) was the worst day I've had in months.  I spent a lot of the weekend in bed and had a ton of pain again.  Today is a little better than yesterday but still bad like I used to be.

As much as Lyme is a roller coaster physically, I think it's even more of a roller coaster mentally.  Even though I was used to feeling really crappy for nearly a year and a half, it hurts more this week after having a relatively good week last week.  I got a slight taste of "freedom" from the prison of Lyme, and now it's got a hold on me again.  I'm hoping this is just a fluke and I will continue on the upward trend I have been on for the past month.  I'm so ready to put this all behind me.

Monday, August 12, 2013

Lots going on!

Wow, it’s been a long time again.  Sorry.  Apparently I wasn’t cut out to be a blogger who updates her blog with any kind of consistency…

Things have been busy around here, as always.  In early June we got a Wellness Pro machine, which is a TENS unit that utilizes electromagnetic therapy to help the body heal.  Technically it is for pain relief, which we both need, but there is also some evidence that suggests that some of the frequencies can kill the Lyme spirochetes.  Desperate for some help, we decided to give it a shot at our doctor’s recommendation.   We have had fairly good results so far.

(Wellness Pro)

Tim continues to be very sick.  It has been scary to watch him spin out of control again.  He had been seeing a small amount of progress in the beginning of the summer once his IV medications had a chance to kick it.  However, at the recommendation of our doctor, he stopped his medications to give the Wellness Pro a try, and that seemed to cause him to lose a lot of ground.  He is again unable to leave the house and spends most of his time either in bed or on the couch resting.  He noticed evidence of the Wellness Pro being helpful for him, but it seems that it was just not enough to keep the infection level low enough for his body to handle at that point.  He continues to use it, but he is also back on his IV medication.  It seems that both the Wellness Pro and his IV medications will be the proper combination of treatment for him at this point.

His weight has dropped some more to the point where he’s very concerned about it.  His energy has plummeted as well.  He is unable to walk up or down the stairs or pick up our 2 year old.  This is really hard, both for him and for me to watch, because he used to take great pride in keeping his body strong and fit.  We are both hopeful that he will be back to his former strong and athletic self at some point, but these months and years of physical pain and weakness are starting to take their toll.

We had an appointment (a phone appointment, as Tim is too sick to leave the house) with our doctor last week and, while he was helpful in my case, he didn’t have much to say to Tim, which is very frustrating.  Tim has an appointment coming up with another well-respected Lyme specialist in our state but out of town next month.  We feel like our current doctor has been pulling his hair out trying to deal with Tim’s complicated case for a while now, and we almost feel like he’s given up, so we are very hopeful that this new doctor will be able to help Tim greatly.  Please pray that Tim will be strong enough to make this trip.  It will require a long drive both ways as well as a night in a hotel.

He is still obviously too sick to look for a job, so that is hard on us.  We are burning through our resources pretty quickly and are hopeful that he will be able to look for a job soon.  At this point, we don’t know what the future holds for our family.

Andrew has been off his meds since January and has been doing fairly well since then.  We had been starting to see some concerning signs that maybe he wasn’t fully over the Lyme, and then he got a new tick bite in mid-July.  We have him on a month-long course of antibiotics right now, and he has been showing even more signs of still having an active Lyme infection.  We are sad about that, but he seems to be mostly handling it OK.  We are looking into the possibility of putting him on some herbal treatments as long-term maintenance when he is done with the antibiotics later this week.


For the first time in about a year and a half, I feel that my health is finally fairly stable. (For more about my struggle, please see here.)  That is a huge thing for me to be able to say.  I still have a very long way to go in regaining my health, but I feel that I am (hopefully) past the horrifying experience of the free-fall and back on the journey of trying to climb up the mountain of health.  I attribute that partly to the Wellness Pro, and I am very thankful to have that.  However, I feel that a main game changer for me was a week-long juice fast I did in mid-July, followed by some other radical short-term diet changes.  One big thing I have noticed recently is that I don’t always require a nap to get through the day anymore.  I have been taking a nap basically every day for over a year now, but now I can get by taking a nap maybe 3 days a week or so.  I also used to wake up in horrible pain everyday; now I wake up in mild to moderate pain about half of the days, and the other half of the days I'm OK.  My cognitive function is still awful, but I'll take what I can get.  Not where I want to be long term, but I’m so happy to be seeing progress.  After 8 long months, I got my PICC out last week!  Yay!  I am hoping that I am well enough not to need it again.


In addition to everything going on around here with our health, I am so happy to share with all of you that I now represent Lilla Rose as an Independent Consultant.  Please take a look at my website (LillaRose.biz/RachelB) to see all the high-quality, beautiful and COMFORTABLE hair jewelry I offer.  Also, please contact me through the blog or my website for our buy 3 get one FREE promotion for all new Lilla Rose customers.  I hope you’ll check it out :-)

(Sarah modeling 2 of our favorite Lilla Rose products)

Thank you all again for the love and care you show our family.  We are so thankful for everyone who is supporting us through all of this!

Tim, Rachel, Sarah (age 8), Andrew (age 5.5) and Jonathan (age 2)