Saturday, December 7, 2013

Tim gets a new IV medication



After the big fat disaster last time, we were really nervous to get Tim in to the hospital to infuse a new medication.  We finally took the plunge.  The infusion went well and he is now on Azithromycin in addition to the Rocephin he was already on.  Here we go again...

Tuesday, October 29, 2013

We made it to the appointment!!!



Last time I updated I mentioned that we had an appointment for Tim with a new out of town doctor but that I wasn't sure he was going to be able to travel.  We made it!  Hallelujah!  It was a 3 hour drive each way and a very long appointment, so we decided to do an overnight.  I'm so glad we did.  It was an exhausting trip anyway, and I'm not sure we would have made it if we would have had to do it all in one day.

We both just loved the new doctor!  She was very kind and very thorough.  She did a very thorough interview first.  We had brought along a ridiculously huge binder with some of the past 5 years of Tim's medical history.  We weren't even able to collect all the records from all the hospitals, doctors and labs yet (we're still working on some of that) and we darn near filled an entire 2 inch binder.  Kind of sad.  Anyway, she took some time to look through all of the info we had brought as well as the mountain of paperwork we had brought that her office had sent us ahead of time.  She highlighted a bunch of things and asked us dozens of questions to get a better understanding of what has gone on since this started 5 long years ago.

After the verbal part of it, she did a thorough physical examination.  She is very old-school and was able to tell a lot by observing different reflexes, skin appearances, skin reaction to different sensations, etc.  It was fascinating to watch.

After all of that, they drew 14(!) tubes of blood.  She is doing all the normal blood tests (CBC, CMP, etc) as well as some interesting ones like food allergies, complete hormone panel, and mycotoxin panel, among others.  He will be doing a strict 2+ week food elimination diet to go along with the food allergy blood test.  It's possible that he will find food(s) that his body doesn't process well that could be inhibiting his healing.

The appointment that was supposed to last 3 hours lasted 4.5 hours.  Whew!  We were exhausted afterwards!

And now we wait...

We do the food testing on our own at home and record the results, and we wait for all the other test results to come rolling in.  We go back to see her next month to review all the test results and figure out a plan of action.

As I mentioned at the beginning, we really liked her a lot.  We both felt a great connection with her and feel that she has excellent potential to help Tim a lot on his healing journey.  Please join us in praying for these next steps for Tim.  He really needs a miracle and we are praying this is it!

Tuesday, October 15, 2013

We're Still Kickin'

We had pics taken of the kids last weekend.  Tim wasn't able to come, but I jumped into a pic with my sweet babies :-)


We're long overdue for an update around here, I know.  Life just gets in the way sometimes.  So, in no particular order, here is what is going on around here lately:

  • First off, Tim is still so sick, and he sometimes even appears to be getting worse.  These last 6 months or so have been a scary free fall for him.  We are trying to get in with a great new specialist who tends to see the toughest cases and often treats them with great success.  That's what Tim is, and that's what he needs.  However, it is hard to travel to see a doctor when Tim is so sick.  It's a never-ending merry-go-round ride that isn't very fun.  He can't get better (probably) if he doesn't see this doctor, but he can't see the doctor because he's too sick to travel.  We had an appointment scheduled for the middle of September but we weren't able to make it so we rescheduled.  The next appointment is coming up next week, but it remains to be seen if he will actually make it to that one.  If you feel so inclined, please pray for us as we take these next steps.  He is so miserable and could really use some encouragement and healing.
  • Andrew had been doing fairly well off his meds, but then he had another tick bite in July.  Bummer.  We had him on another month of antibiotics then to be safe, and then he seemed OK for a few weeks after that.  And then he wasn't.  He started showing a lot of his symptoms hard and fast in the end of August.  For now, we have him on an herbal protocol recommended by our doctor.  We are hoping that we will be able to keep his tiny body from any more assault from antibiotics.  We'll continue to monitor how he is doing on the herbs and go from there.  For now he seems to be handling them well and seeing some improvement.
  • After a rough year and a half for me, I finally had a big jump in the middle of July.  I thought I would continue to see improvement, but that hasn't really happened.  Lyme really is a roller coaster.  I have been off my IV for nearly 3 months now.  The good news is that I haven't had much back-sliding, though I have had some.  The bad news is that I haven't continued the upward trend I was on.  I did another juice fast in mid-September to see if that might help, but it didn't.  I guess that was a bad idea.  I am continuing with the Wellness Pro, and I have also recently started the same herbs that Andrew is on.  I am really hopeful that these things will help and I don't have to go back on antibiotics.  That is my goal, but I will not be a martyr to it.  If it becomes clear that what I am doing isn't working I will talk to my doctor about what my options are.  I have an appointment with him in less than a month to discuss these last few months of completely changing course.  I'm interested to hear his thoughts on how things are going.
  • We started our homeschool year in early September, and we're having a great year!  Sarah is in 3rd grade and Andrew is in kindergarten.  They are both loving their work, and I LOVE the program!  In case anyone is wondering, the program we are using can be found at allinonehomeschool.com.
Sorry again for the delay in getting this update out.  I hope to update more after our upcoming appointment(s).

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.

(Before...) 

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.


(...After)

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!

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

Friday, June 14, 2013

THANK YOU!


Now that our big fundraiser is over, I wanted to take the time to thank each and every one of you who shared our situation with others, prayed for us, and donated financially.  We really appreciate everyone's love and support, as always.

I wanted to wait a little while after it ended because we were still getting some last minute donations in the mail and I wanted to make sure we got a chance to thank each one of you who donated.  Without further ado, a special thank you to:
-Jen
-Chelsea
-Katherine
-Marie
-Josh
-Ted
-Ann Marie
-Tom and Jeanne
-Bill
-Milt and Barb
-Gerald
-Mary
-Linda
-Louise
-Diane
-and 2 anonymous donors.

We are so thankful for all that people are doing to help us through this time!  God's blessings to you all!

Tuesday, May 14, 2013

I'm so behind!

Oh my goodness.  These past couple weeks have flown by and I'm so far behind on sharing news around here.  We have been so busy as well as sick, so I haven't had much time to spend on the computer.  Here are some recent updates:

***On Tuesday April 30, we had our appointment with our Lyme doctor.  He was so happy to hear that Andrew is doing so well off of treatment, but he was not as happy to hear that both Tim and I are still struggling so much.  In the coming weeks, we will be starting some new therapies that he recommended, so we will see where that gets us.

***On Wednesday May 1 we announced the giveaway of some beautiful hand crafted jewelry.  I'm so happy to announce that Jen J is the winner!  She has been contacted and is thrilled to receive her prize soon.

***On Tuesday May 7, Andrew got his cast off!  He is now in a walking boot and doing fairly well adjusting to being vertical again.

 
 ***On Friday May 10, Tim left the house for the FIRST TIME (besides doctor and hospital visits) in over 6 months!  We drove a couple miles to the nearest lake (we are in MN after all-land of 10,000+ lakes...) and he took his newly cast-less fishing buddy fishing from shore.  He is currently unable to drive so I had to be the chauffer, but it ended up being a nice family outing.  That was a big stress on his body and he was in bed for the next couple days, but it was such a big deal for Tim and Andrew to be able to do their favorite activity together after Andrew just spent 7 weeks in a cast.

***TODAY (May 14) is Jonathan's 2nd birthday.  He is growing into such a funny and caring little boy, and we can't imagine life without him.  It is so bittersweet.  On the one hand, we're sad that we've spent his entire existence miserably sick, but on the other hand, we are so happy that at least one of our children probably won't remember this dark time in our family's life and will hopefully only know healthy parents.  Happy birthday little guy!

***As of today, we are at over half of our goal on our campaign (between online giving and people mailing donations) with 13 different contributors.  WOW!  Thank you so much!  We are so thankful that people love us and want to invest in our family.  In a few short weeks, we will have no more income for the foreseeable future, but we know that God is taking care of us, in large part through you all, our generous donors.

***Related to our campaign, please share with others using the link above, and then enter here for your chance to WIN an Amazon gift card.  Who can't use that?!?

***And most importantly, as always, please, please, please contact us (or have others contact us) with any questions about Lyme.  I had a friend contact me yet again just today about a family friend that is very sick and they have no diagnosis.  There are SO many people in this position, as we were, and it is so heartbreaking.  We talk to and counsel people all the time about Lyme, and we love to be a resource and use our struggle to help others.  We have vowed to do whatever we can to help people avoid what we're going through, as well as to walk beside people who are already stuck in it.  We can be reached at ourlymelife@gmail.com or through our Facebook page.

Tuesday, May 7, 2013

Ten Tick Tips


Our campaign is a week old now and thanks to your generosity we have reached 10% of our fundraiser goal!  If you haven't had a chance to donate, don't delay any longer - do it today HERE!
And since the weather is warming up, here are some helpful tips we're sharing as part of Lyme Disease Awareness Month.
If you are spending time outdoors you should take sensible precautions to try to avoid exposure to ticks. Ticks can transmit a number of disease to humans and pets within hours of being bitten, especially if the ticks are not removed properly once attached. If you are bitten, early and adequate treatment is paramount to help avoid long term health consequences caused by Lyme and other tick borne diseases.

Here are some suggestions for personal protection from ticks.
1. Wear light‐colored clothing and a hat to help spot ticks more easily.
2. Scan clothing or any exposed skin frequently for ticks while outdoors.
3. When possible, stay on cleared, well‐traveled trails.
4. Keep grass cut short and create a tick barrier or "safe zone"on your property.
5. Following instructions on the label, treat clothing with a product that kills ticks.
6. Avoid sitting or lying directly on the ground, even during the cold of winter.
7. Place outdoor clothing in a hot dryer for at least one hour to kill ticks.
8. Make it a habit –check yourself, your children and pets for ticks every day.
9. Learn how to properly remove a tick and about Lyme and tick borne diseases.
10. Shower thoroughly after being outdoors, and don' forget, do a tick check!

Tuesday, April 30, 2013

Another Lyme Story

Here is a story about a local woman suffering from Lyme.  Like most of us, she has lost so much in her life.  It's just heartbreaking :-(

http://minnesota.cbslocal.com/2013/04/28/accomplished-twin-cities-hairstylist-fighting-lyme-disease/

Monday, April 29, 2013

Our Campaign Is Live!

 
Hi Everyone  - This is Marie A. and I'd like to ask for your help. It's really awesome how everyone has been so supportive of Rachel and Tim through their suffering from Lyme Disease. But we need to ask for more than blessings and prayers. As both of them continue their expensive drug therapies, they were further burdened by bursting water pipes in their home forcing a long relocation, and then recently their only source of income has come to an end as Tim's employment was terminated when his company laid off hundreds of people.  This of course also affects their insurance coverage, which will end in September.  At this point, both Rachel and Tim are too ill to even look for work.  Tim was only able to continue working prior to the lay-off because they allowed him to work from home for most of the last year. 
 
They are desparately in need of some assistance and you can help. We have set up a fundraiser on Indiegogo and hope that you can help them spread the word. Sharing the campaign would be a tremendous favor, even if you can not afford to offer monetary assistance. We are planning to campaign and hope to raise at least $5000 for medical expenses in one month.
 
To do this we need your help to share, like, tweet and pin this to spread the word. The easiest way to do this is to enter our Giveaway. We've solicited some gifts and are having some giveaways during the month to keep the action going. You can enter the $25 Amazon Gift Card Giveaway by clicking HERE or on the GIVEAWAY tab on the top of the blog.
 
Anything you can do is much appreciated.

Thanks, and God Bless.

Saturday, April 13, 2013

One Year



Friday April 13, 2012.  After trying to go for 3 years in a row and being unable to attend, I was thrilled to be able to go to our local homeschool conference for the first time.  I left the older kids at home with Tim and drove across the Twin Cities in the rain with 11 month old Jonathan in the back seat, giddy with excitement.  I had been sick the previous week and was feeling weak, but I was optimistic as I strapped Jonathan on my back in the camping backpack we had borrowed from a friend.

I made it into the conference center and got registered.  I hurried into the first seminar and took a seat in the back, since I was already feeling dizzy and light headed.  About 5 minutes into it, I slid out the door, barely strong enough to carry Jonathan and my purse.  Thankfully, and good friend and her husband were at the conference, though I was not with them at that time.  I called my friend on her cell phone and found out they were sitting at a table in the lower level.  I took the escalator down, body shaking, praying the whole time that I wouldn’t pass out with Jonathan on my back.  I stumbled to where my friends were and asked them to take Jonathan from me.
 
Immediately I started getting hot and cold, dizzy, light-headed, confused, and I felt like I had bricks strapped all over my body.  I was having trouble catching my breath and my heart was pounding wildly.  My friends were asking me what was wrong and I had no idea.  I called Tim and just cried into the phone because I couldn’t tell him what was happening.  My wonderful friends cared for Jonathan while I laid there across a few chairs in the basement of the conference center trying to figure out why my body was failing me and what to do about it.  After a while, I decided that I didn’t think it was necessary to call 911, so my friend’s husband went to find a wheelchair so they could bring me out to the car.  He was going to drive Jonathan and me home, but, after the longest and most embarrassing wheelchair ride of my life, I somehow miraculously pulled it together enough to feel able to drive home.  Looking back, I should have accepted the ride home, but I felt guilty for them having missed a big portion of the conference already.  I made it home in one piece and spent the next few days in bed recovering.

It has now been a year since that awful day.  Up until that point, I had been managing my Lyme pretty well and living a mostly normal life.  I think I was in denial, which in hindsight was really dumb, considering what I had already watched Tim endure.  That episode started a months-long terrifying downward spiral.  It was the beginning of seizures; numbness in my arms, legs, and face; panic attacks; muscle twitches; getting lost in familiar places; inability to regulate body temperature; cognitive disturbances; visual disturbances; halting speech; vertigo; headaches; crushing fatigue and more along with more similar episodes in the following months.
Last summer was awful for me.  I hardly ever left my house.  I had friends taking my kids on outings, doing our laundry, and bringing meals.  I am forever grateful for our family and friends being so supportive through all this, but it has still been so hard being unable to care for my own family at times.  As summer turned into fall and my symptoms continued to worsen, we decided something different needed to be done.  We were planning a trip for Tim to see a highly respected Lyme specialist in New York (because, in spite of all I’ve been through, he is still more sick and a more complicated case than I am) but it turned out that we needed to cancel that trip because we were both too sick to travel.  So, on November 30, 2012, our son Andrew’s 5th birthday and the day we were supposed to leave for our trip to New York, I was in our local hospital having a PICC line inserted.  It was a rough day with some scary complications, but I was so thankful to have my mom by my side, as Tim was too sick to accompany me to the hospital.

I am now nearly 5 months into my IV treatment.  I started out with both Rocephin and Zithromax for the first 3 months.  The first month was absolutely horrendous.  I didn’t leave the house at all and could barely get out of bed.  I had the worst pain and the worst cognitive function I have ever experienced.  The second month was a little better and I was able to leave the house occasionally.  I was still having the groceries delivered and friends were still bringing meals, but I was able to be out of bed most of the time.  By the third month I was back to a minimal amount of functioning.  I still stuck to within a few miles of my house since I didn’t feel comfortable driving long distances, but I was able to run to the store to grab a few things when needed.
At the end of 3 months we made the difficult decision for me to go off the Zithromax.  Tim had just gotten his PICC and we weren’t able to afford both of my medications along with his medications.  It was around this time that Tim had his hospital episode and Andrew broke his leg the following day, and we were also fairly certain by this time that Tim was going to lose his job, so stress was high.  I also went from trying to allow my body to rest and heal with fairly minimal physical exhertion to carrying around a 40 pound kid many times a day in the blink of an eye.   Add to this lugging his wheel chair in and out of the van taking him to several doctors appointments and ER visits over the course of a few days, and my body was really revolting.

I was so thankful to have made it through that chaotic week, but my health again took a turn for the worse.  I think it was a combination of stopping one of my main medications, stress, and sudden and repeated physical exertion.  I have now ordered the Zithromax again and will be re-starting it in the next couple days.  Between that and Andrew now having a partial leg cast (instead of the full leg cast he had originally) that allows him to be able to crawl around the house sometimes instead of being carried, I am really praying that I can get back the progress I saw and continue to make more progress.
I know I usually write about Tim.  That is mainly because his condition is so much more precarious than mine, and also because I don’t really like to draw attention to myself.  I struggled with whether or not to write this post, but I decided to go for it.  My goal in writing this blog as a whole is to give people on the outside a glimpse of our real life.  This is our life.  I want to get the word out about Lyme and how it affects people and families.  It is my hope that by hearing stories like ours and others, people will be able to 1.) be proactive in protecting their loved ones from this horrendous disease, and 2.) have an understanding of Lyme and be able to use that understanding to be more compassionate towards families dealing with Lyme and other difficult diagnoses.

So there you have it.  That is the story of the last year of my life in relation to Lyme Disease.

Friday, April 12, 2013

Happy birthday Sarah and new family pic



Our sweet girl turned 8 last week and we got to have a small celebration with family this past weekend.  Above is a current pic of our family :-)

Thursday, March 28, 2013

Big Layoff

After waiting on pins and needles for many weeks, we finally found out officially this week that Tim has been laid off from his job.  We are so blessed that his employer has been so gracious in dealing with his illness these last 4+ years.  Most recently, his boss had been allowing him to work from home 100% of the time since he was too sick to go into the office.  He even made accommodations for Tim to join meetings via conference call.  It was really a perfect situation for us, and we were so thankful for it while it lasted.

We aren't sure what we're going to do at this point, but we both feel at peace knowing that God is in control of this newest set-back for us.  We both feel strongly that the right opportunity will come along in His timing.  However, as of right now, Tim is too sick to look for a new job.  That means that he also will not qualify for unemployment, since a main requirement for receiving unemployment is the ability to be actively looking for work, going to interviews, etc.  We are looking into starting the process for disability, but we know that can be a very long process so it probably won't be a feasible option to get us through this time.

The one thing we weren't expecting when we got the news about his lay off was that we will be able to keep our same health insurance for several more months.  That is a huge blessing for us with all the health issues we have currently in our family, including Andrew's broken leg on top of the 3 of us having Lyme.  At least this extra time we weren't expecting will get both Tim and myself several more months into our PICC treatment, and hopefully we'll be done dealing with Andrew's leg.  As an aside, Andrew is our sweet 5 year old with congenital Lyme.  He is currently doing well despite his broken leg, and we are so thankful for that.

We will keep all of you posted as we know more.  If you would, please keep us in your prayers as we navigate this new path we're on.

Friday, March 22, 2013

Andrew's Accident



The following is something I posted on my personal Facebook page yesterday regarding our 5 year old son Andrew.  He is coincidentally our child who has been struggling with Lyme for the past 3 years as well, so we are so sad that he is now dealing with this newest health crisis. 

Update on Andrew: He was out sledding in the neighbor's yard yesterday afternoon with Sarah and the other kids in the neighborhood. At about 4:45 I was in the house making dinner and Sarah and their friend pulled Andrew home on a sled because he couldn't walk. Apparently he was sledding down the 'safe' hill and his sled somehow veered into the woods. He couldn't stop it, and he hit a fallen tree. I carried him in and laid him on my bed and saw that his ankle had strange-looking swelling. We put ice on it and called the pediatrician's office.

We ate dinner and called my wonderful father in law to come over and stay with Tim and the other kids. Andrew rested and ate dinner and slept off and on, and we got to the ER around 7:30. They got him right into X-ray, but then it took a while to get the results back. The ER doctor and the orthopedic on call said that both the tibia and fibula are broken. They put him in a temporary full-leg cast for now, and we are going to the orthopedic tomorrow to figure out what's next. As of right now, it looks like he is looking at 4-6 weeks in the full-leg cast, and then another 4-6 weeks in a walking cast.

Please pray for his healing, and also his emotional well-being. He is not in a good place right now. He is having a hard time processing everything and is also in a lot of pain. Also, please pray for the rest of us as we walk through this with him. Tim is still in bad shape, and there are some other major changes coming our way in the next few days unrelated to our health issues. And for me...since Andrew can't walk for the foreseeable future, he needs to be carried everywhere. At this point, Tim isn't able to do that so it rests on me. With My PICC, I'm technically not supposed to lift more than 10 lbs, but that was pretty unreasonable from the start. What mom of little kids can go without lifting for several months, right??? Because of that though, we're trying to see if we can somehow get a wheelchair for him to use when we have to go out for appointments. We are planning to try to get him into PT eventually to see if they can teach him how to use crutches, but he's not up for that right now.

Thank you all so much for all the love and support you've shown us as we walk through this difficult season in our lives. We appreciate it so much! ♥

Wednesday, March 20, 2013

Big Fat Disaster

That's what yesterday was. We showed up to the hospital for what was supposed to be a routine infusion, and within 10 minutes everything went haywire. Out of nowhere Tim went pale, he couldn't breathe, his heart rate and blood pressure were elevated, and he was shaking involuntarily. Suddenly the room was full of nurses. They stopped the medication drip and replaced it with saline, hooked him up to oxygen and did an emergency EKG.

Once they got him stable enough in the infusion center they sent him down to the ER to be monitored. The ER doctor talked to our Lyme specialist about his reaction so he is aware of what is going on. They monitored him for a while and then we eventually made it home with 10 minutes worth of a one hour infusion. We are so traumatized.

My sister was here watching the kids while we were at the hospital, and we had an impromptu sleep-over with her in case we needed to run back to the ER at any point through the night. Thankfully, the night was uneventful and Tim has been able to rest peacefully.  He is still feeling very tired and weak today from the ordeal.

We are trying to determine the best course of action with Tim's treatment and it is so frustrating. He is currently just on the Rocephin. We were so hopeful that the new medication might be our answer, but his body is just too fragile to handle it on top of the other IV medication.  The past few weeks have been really hard for him as his body tries to adjust to the new medication.  We are waiting to hear back from our doctor's nurse today to figure out the next step.

Tim has never been as physically fragile as he is right now. We have spent years getting our hopes up each time he starts a new treatment, each time he sees a new doctor, and each time he feels some improvement, as if each new doctor or medication is our savior. This is causing us even more to realize our need for our true Savior.  We are praying for his healing of course, but even more, we are praying that God will grant us contentment in whatever circumstances we find ourselves.

Monday, March 18, 2013

Month 1 on the PICC

Today marks a month since Tim got his PICC, so we wanted to give a quick update.  He has been through a lot in this last month, starting with a horrible experience getting the PICC put in.  Then we moved immediately on to a bad skin reaction that lasted a couple weeks, with a lot of nasty herxing thrown in the mix.  His skin reaction seems to have resolved, so we are very thankful for that.

He was doing well enough the other day to take a little walk down to the end of our relatively short driveway.  This is the same guy who used to run 5 miles after working a strenuous job on his feet all day and then play basketball and lift weights for the rest of the night.  Baby steps.  We're hoping to see that strong athletic guy back here again some day, but for now we will celebrate the victory of walking to the end of the driveway without spending the rest of the day in pain.

He woke up this past Saturday with some sort of pinched nerve in his neck/back and has been in severe pain with that.  It's too bad too, because he had some periods of relief from the Lyme symptoms during the same time.  Things could have been looking up a little if he could have moved his neck at all.  We got him into the chiropractor first thing this morning so we're looking forward to his neck being functional again soon.

We go in to the hospital tomorrow to get his first dose of the new medication he is adding.  He has been doing only Rocephin for the last month, and he will be adding in Doxycycline in addition to the Rocephin for the next month or two.  We are required to do the first dose of any new infusion medication in the hospital in case of any negative reaction.  We are expecting to see some more herxing with the addition of this new medication.  However, our doctor said that people often see good improvement of symptoms relatively quickly on this medication, so we are hopeful about that.  We are also hopeful that *if* spring ever comes to these parts, being able to get fresh air and sun will help not only our physical symptoms, but morale as well.

Sunday, February 24, 2013

Saturday, February 23, 2013

Crazy Week



It has been a crazy week with Tim’s health.  He started out by getting the PICC on Monday.  That was really rough on him with how his body responded to the line placement.  Once he got past that, he had his first dose of his antibiotic in the hospital and we made it back to the hotel so he could rest.

On Tuesday our nurse Jackie came and did Tim’s official intake and his first dressing change.  They always need to do a dressing change the day after the line placement to check the insertion site and make sure everything looks OK after the procedure; after that point, dressing changes are typically once a week.  On Tuesday evening, Tim started to notice an allergic rash on his upper left arm where his PICC is.  Last time he had the PICC he was allergic to almost every cleaner and bandage there is, so we felt prepared this time knowing which one type of bandage and cleaner he was able to use last time and having them on hand.  That’s why it was very confusing to us when a rash showed up 24 hours after the PICC placement.  Because of knowing which dressing he can use, the rash is not caused by the dressing.  It is around the outside of the dressing, which has us stumped.



On Wednesday when he woke up, the rash was flaming red and spreading so we called Jackie and had her come out and look at it.  She was as confused as we were but suggested trying some hydrocortisone cream to help with the uncontrollable itching.  At that point we thought we had figured what was causing the rash and came up with a fairly simple solution.  It turns out we were wrong.

On Thursday the rash continued to spread and would get better and worse without any apparent cause.  By this time it had spread to underneath the bandage, which can be dangerous.  Having any skin irritation near the insertion site has the potential to be problematic and needs to be watched closely.  It is also insanely itchy which makes it hard for Tim to work, sleep, etc. with the distraction.

On Friday the rash was very red and raised, and he now had pain and swelling in his arm too.  After a series of phone calls to our nurse and doctor, it was determined that Tim needed to go to the ER to have things checked out.  Thankfully a friend had offered to take our older 2 kids over to her house to play so we only had to bring Jonathan with us.  At the ER they did a chest x-ray to make sure the end of the line was still in the correct place as well as an ultrasound of his arm and chest to look for blood clots.  Thankfully they were able to rule out any serious complications.  However, we are still stuck with this uncontrollable allergic reaction with no idea what he is allergic to.

Today is Saturday.  Tim has had a horrible day and is in a lot of pain due to herxing.  “Herxing” is a short-hand name for a “Jarisch-Herxheimer reaction.”  This term refers to the worsening of symptoms due to the die-off of the bacteria.  It is a good thing that this is happening, as it means that his medication is doing its job, but it is very unpleasant to experience.  His rash is still bad, and we are very concerned about it.   A lady from our nurse’s office who helped us through yesterday (our regular nurse wasn’t working yesterday) has been calling throughout the weekend to check on Tim and see if we’ve seen any improvement.  Since he isn’t seeing any improvement, and is even worse at times, we have a nurse scheduled to come see us again in the morning.

At this point, the rash has been really bad for 5 days, and we still have no idea what is going on.  It is really stressful not knowing if we are doing something wrong or dangerous because we have no idea what his body is reacting to.  A few different times we have thought that we knew what was causing it.  But then, when we changed what we thought it was, the rash didn’t seem to get better. 

For tonight, we will sleep with an Epi-pen on the nightstand and hope we can make it to our nurse visit in the morning without another ER visit.

Monday, February 18, 2013

PICC is in


We arrived at the hospital around noon today for Tim to get his PICC put in.  I wasn't sure if or how long I would be able to stay with Tim given my current health situation, so we were very thankful that Tim's dad was able to meet us at the hospital and help us through the rough time.

Everything seemed fine as we were getting checked in and talking with the nurses.  The doctor (who happened to be the same doctor who placed my PICC less than 3 months ago) was very nice and came in to talk with us before the procedure at our request.  When Tim had his PICCs before he had several complications, mainly revolving around being allergic to everything.  Because of that, we had to bring our own specially ordered bandages from home and request that they use a different skin cleaner than they normally do.  They also ended up having to stitch the line into his arm because he is allergic to Statlocks, which are normally used to keep the line in place. 

According to the doctor, the placement itself went well.  However, Tim had a hard time tolerating it because he was very sick and weak during and after the procedure.  After the PICC was in, he had to go down to the infusion center to have his first dose of the antibiotic Rocephin.  That was uneventful.  That is the medication he was on last time, so we suspected he would tolerate it fine.  In the coming weeks he will likey add in another medication or 2.

Thursday, February 14, 2013

PICC Consultation

Today we had Tim's doctor's appointment to discuss plans for his PICC.  It was awful to get there with how Tim was doing and we almost didn't make it, but we ended up making it there and through the appointment.  This was a new doctor for Tim, though I have seen her once in the past.  The appointment itself went well, and Tim liked the new doctor.  He had a bunch of labs drawn so we are waiting to get the results back on those.

His hospital appointment is scheduled for noon on Monday.  Tim is really stressed out about that, but we are so hopeful that this will help him get over this current hurdle.    The doctor is pulling out the "big guns" and we're expecting big things.  Our doctor said that it typically takes about 3 months on IV to get over the initial horrible-ness, and that is basically what I have experienced.  So, Tim will likely have a very rough next few months, but we are hopeful that he will be well enough to go fishing, play basketball with the kids, and all the other things he enjoys by summer time.  Please pray with us that that will happen.  He has been in such bad shape and really needs a breakthrough.

Wednesday, February 13, 2013

Our Lyme Story - Part 2


 

This is a continuation of our Lyme Story - see Part 1 for the beginning.

Tim has been better and worse throughout his 4+ years of being sick, but he is currently in a very bad spot. He is basically back to where he was in the beginning, unable to get out of bed. Thankfully, he now has the option to work from home, so that is what he does currently. His boss has been great in working around his limitations. He will be getting another PICC in the next few weeks, and we are hoping and praying that that will help him see some improvement. He has been in a free-fall with his health lately and we are anxious to get him back on track.

I didn't have a lot of bad symptoms for the first couple years I was sick. That was when I was pregnant, and it is said that often pregnant women get a reprieve from symptoms due to how the hormones take over the body. I hit a wall in April of 2012, and last summer was really rough for me. I got a PICC this past fall, and I am currently in month 3 of my IV treatment. The beginning was very difficult, but I am so happy to be seeing some slow improvement. The projected length of my IV treatment is currently around 9 months.

Our son Andrew just recently stopped treatment after 2 years. He seems to be doing better, but only time will tell. We are hopeful that he can put all of this past him and focus on growing up like any normal healthy boy.

The newest development in our continuing story is the we are currently living in a hotel after a pipe caused water damage in our home. We are in the midst of an insurance claim, and we're anxious to get back into our home. We have also recently discovered that our home had a severe mold problem. Given the strong correlation between Lyme and mold toxins, it is very likely that that is a big part why Tim especially has been experiencing much worse health problems lately. We have been able to have that taken care of while we were out of the house anyway, so we are hopeful that that will also help Tim as well as the rest of us get back to better health.

Thank you for your support of our family during this trial. We appreciate it and will do our best to keep you up to date on what is going on with us.

-Tim, Rachel, Sarah (age 7.5), Andrew (age 5), and Jonathan (age 1.5)

UPDATE 4/11/13: A lot has changed since I originally wrote this post 2 months ago.  Tim got a PICC in February and had a rough start (read parts of it here and here).  Thankfully he has not had any more complications, but he has not seen much improvement yet, so we are pretty bummed about that.

At the end of February we were able to get back into our house after the water incident.  It is so good to be home.  We are still dealing with the insurance company, bank and contractors to get all the loose ends tied up, but that is almost behind us.

In March, Andrew broke his leg, so that has been keeping us busy.  He had a full leg cast at first, but he currently has a cast up to his knee.  That makes it a lot easier on me since I have to carry him almost everywhere.  He is able to use a wheel chair when we leave the house.

Also in March, Tim lost his job.  Even though we kind of saw it coming, it was still a huge blow.  As I mentioned in the original post, his boss was so accommodating in allowing him to work from home so it really was a perfect situation.  At this point, we're not sure what we're going to do since he's much too sick to interview, let alone hold down a job in an office.

Monday, February 11, 2013

Our Lyme Story - Part 1


 


Our Lyme story begins in 2008. Tim had recently started a great job with a big corporation, and we were thrilled to have just bought our first house with our young children who were 3 and 1 at the time. About 3 weeks after we bought our house Tim got really sick, and he hasn't been well since then. He spent the first 5 months of 2009 on disability from work, lying in bed and going to nearly 30 doctors, to no avail. He lost a bunch of weight, was in constant pain, and the former athlete couldn't even walk to the kitchen for a snack without needing a nap. I remember telling him through tears that we had to figure out what was going on with him or I was afraid he was going to die.

We eventually figured out that he was struggling with Lyme disease. In May of 2009 we had to travel to New Jersey from Minnesota with our kids to get him into a specialist who could help him. He began treatment then, and then he did 6 months of IV treatment in the spring and summer of 2010. The PICC line in his arm that was delivering his IV medications got infected so he had to have it removed. Since then he has been on oral medications as well as over a year and a half of twice-weekly Bicillin injections.

In early 2010, I, Rachel, started noticing a lot of the same symptoms Tim had in the beginning. I was diagnosed with Lyme in May of 2010. Lyme can be active in one's body but dormant, and there is a big risk of transferring Lyme to the baby during pregnancy. Our younger child was only 2.5 at the time so we had him tested as well. Sadly, he also had Lyme. We were now dealing with 3 out of the 4 of us in our family fighting this disease. Thankfully our daughter has remained healthy throughout all of this.

I was surprised to find out I was pregnant just 3 months into my Lyme treatment. Thankfully, I had a great doctor caring for me during my pregnancy. We had our baby tested at the time of his birth in May of 2011, and he did not get Lyme from me. Praise the Lord. I cried happy tears the day we got that news. :-)

to be continued...
(read Part 2 here )

Friday, February 8, 2013

Hotel Living

A sweet friend asked how we're doing, so I thought I'd share a quick update with anyone else who might be wondering :-)

Almost a week in the hotel so far. House is coming along. They found a bunch of mold in our house, which we weren't surprised about. We have to have that remediated before we can move back into our house, which is totally separate from the insurance claim. That adds a big headache, but it seems that that could be the cause of Tim not getting better. He's pretty much worse than he was 3 years ago, and that makes sense if the mold has been growing for a while. It's a huge and complicated process, but our parents are helping us navigate it all. We're hopeful that taking care of that should help a lot. We had our dr appt yesterday. We had to do a conference call instead of going in because Tim was too sick to go, but it went pretty well over all. We got a lot of info, and it was a huge deal for us to find out that our Lyme dr is somewhat of an expert in the correlation of Lyme and mold toxins. That is really Providential. He is able to help us heal our bodies and give us advice about rehabbing our house. Regarding Lyme treatment, he said he likes to see people on a PICC for a minimum of 9 months if possible, and I'm 2 months in. Tim will likely need a PICC in the next month or 2 also, so that should be an adventure. There is a lot on our plates right now, but at least we feel like we have some direction and maybe even some hope.

Welcome To Our Lyme Life

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