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 :-(


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.
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.