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!"

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.

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/

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 5^th 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.

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.

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.

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.

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. 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! ♥

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.