Archive for 6pm-9pm

6pm-9pm: Day In Life Of Lyme

// December 7th, 2010 // No Comments » // 6pm-9pm, Day in life of Lyme, Eric's Blog


After I’ve had some time to cool off from the exertion it took to take a shower, it’s time to start the dressing change.  As I said in my previous post, after 28 days my health insurance stopped paying for my IV medication and nursing care.  We now pay out of pocket, and do the dressing changes ourselves (with the help of the Dr’s office when needed).  It’s been a weekly ritual for almost 11 months now.  Mom and I get dressed up in our masks and gloves and get to work.

I dread doing this each week, but it always seems to go quick and isn’t a big deal once it’s over.  I begin by swabbing down the old dressing and area on my arm with an alcohol pad.  By this time we have prepared a sterile field on the kitchen table, with the supplies all around as needed.  Supplies include a dressing change kit (which includes alcohol swabs, a chloroprep wash, a new dressing, tape, gloves, mask and the sterile work area “cover”.

I then begin the process of taking the tape and the dressing off, trying not to pull on the stitches that keep my PICC line in place.  Once it’s off I notice the line has come out of my arm about an inch or an inch and half from where it has been the last 11 months.  I check with Mom to make sure I’m not seeing things, and she agrees.  My stress level goes up knowing I will have to spend tomorrow heading to the hospital to have it looked at and possibly fixed.  I try to refocus on the task at hand, and finish the dressing change.

I’m swabbed, washed and redressed in a matter of minutes, and return to my bed.  I lie down, pick up my symptom journal and this is what I write.  “Lower back – bad, visual hallucinations, heart palpitations when I sit up for more than a short period of time.”

I have to lay flat now because of how much my lower back hurts.  Its arthritis pain and today it’s throbbing and making the pain spread throughout my back and buttocks.  (I just love the word buttocks, I will look for any opportunity to use it.)

The visual hallucinations are like shadows in the corner of my eye.  I may think I see a bird in the corner of the room from the corner of my eye, but there is nothing there.  When I first became sick I used to always think I saw a rabbit shaped animal out of the corner of my eye.  But there was never one there.  With treatment, these minor visual hallucinations, as well as the many floaters I had, have all dissipated for the majority of the time.  Today is one of those days with no rhyme or reason that a random symptom appears.

The heart palpitations when sitting up for more than a certain period of time is something that seems to be new.  I’m just putting the pieces together today that when I lay flat, the palpitations seem to go away.  But after I’ve been up a while they return full force.  Every so many beats my heart skips and double beats, and with that it’s like having my breath taken away from me.  While my heart rate remains normal, the constant feeling of losing my breath becomes annoying very quickly.

After my dressing is changed and I’ve returned to bed, I take the 9 pills I take midday.  (Bringing the day’s total now to 44 pills.)

We have company after that, and I make an attempt to be social, but spend the rest of the time laying in bed checking email, trying to work on a couple of things for LymeBites and Lymenaide, and helping Mom with dinner while her guest is here.

By 7:30 we have eaten dinner, and I’m back to bed.  (Are you noticing a pattern here?)  The palpitations are really bad now, almost unbearable.  Not because of pain or serious problems, but because it is annoying and my tolerance for it decreases dramatically throughout the day.  My body has had enough of this day and the exertion I’ve put it through, so by now I have a general feeling of weakness and shakiness.  My pain levels are down by now thanks to the array of medications I’ve taken throughout the day.  I just don’t have any strength, so I lay in bed and rest.

At 8 I begin working on LymeBites, working on some posts and taking care of some stuff.  I do that, in between emails and Facebook, until 9 when my shows for the night come on.  The last hour wasn’t very productive, though I got some things done, but at this point in the day my attention span is very short, and I distract easily.  Sometimes all it takes is a random thought to take me on a 20 minute journey.  This is how I spend the last hour of this segment of my day.

By now I’m exhausted, my body feels a bit out of my control, my mind is starting to be easily distracted, as well as beginning to become irritable without much provocation.  This brings us to 9pm.  Next is the last period of my day, by now I hope you’re beginning to see what a Lyme patient goes through in a day.  This is just my day, so you can imagine how many other versions of this there are.  But you can be sure that every one of us has a day similar to this in trying to treat and survive this disease.

To be taken to all 5 segments of my “Day In Life Of Lyme” visit  This is the 4th part, the final one will be posted in a few hours.