Posted on Oct 23, 2009 in Blog |

Originally posted October 23, 2009

Two Sundays ago, I couldn’t get down the stairs to do the day’s laundry.  Even trying one step at a time, left leg going first each time, it just wasn’t happening. That’s the first time I surrendered to the stairs.  I have a feeling it won’t be the last.

Last weekend, it was my dad’s 80th birthday.  We had meals together, family photos, and time spent just talking.  It was rainy and cold all weekend.  I found out how much pain those two natural elements bring to my knees and back.

I had also started the antibiotics on Friday, the 16th, one day after Dad’s 80thbirthday.  Everyone has been telling me that if I feel pain while on the meds, it’s a good sign.  It’s like the meds go in after the bacteria and chase them out, right now from my knees and back.  And these bacteria go nuts like a hornets’ nest.  They’re in there zinging, pinging, zigging, and zagging, trying to find new places to settle in.  in the meanwhile, all that activity causes even more pain for the host (that would be me).  So while the pain has been worse, I’ve been wearing a bigger smile.

Now, why would I be smiling when I am in worse pain than before?  Because I know it’s working.  I am starting to win this battle.  I am getting rid of some of those buggers.  And eventually, I know I will get better.  That one statement:  Eventually, I will get better is something I didn’t know for at least six years.  I thought I might make it into a wheelchair before my 78 year old mother.  Now, I know I may, but it’s unlikely and if it does happen, it will be only temporary.  I have hope.  I have vision.

After donating 15 vials of blood last week for tests, I had to go back today and give one more; one of the vials had clotted in transit.  Advanced Lyme can cause “sticky blood.”  That’s what I have.  Let’s hope this vial stays fluid.  Yes, I am taking something for the sticky blood.  Yes, I told Dr. M about it.

This week, my vision was so blurred for two days that I couldn’t read the computer over anyone’s shoulder.  I couldn’t read my papers in front of me.  I certainly could not proofread anything.

Two nights ago, I finally created a Medication schedule in Excel so I know what I take and when; and even how (i.e., empty stomach, full stomach, with dinner, ½ an hour before dinner).  I highlight the anti-biotics and the pro-biotics so that I don’t take them at the same time.

Tonight, I put the medication schedule into my phone and assigned ring tones to them.  I like to personalize them as a way to differentiate the messages coming to me.  My medication alarms are “Put the LIME in da Coconut and drink it all up . . .” Get it?  Lime/LYME?  Come on, you’ve got to at least be smiling . . . .

In another part of the same song, he sings, “She put the lime in the coconut, she called the doctor, woke him up, And said, “Doctor, ain’t there nothin’ I can take, I say, Doctor, to relieve this belly ache? I say, Doctor, ain’t there nothin’ I can take, I say, Doctor, to relieve this belly ache?”  That section of the song is now Dr. M’s ringtone.

I have to find some ways to laugh or I will go insane . . . .

The part I struggle with now is bedtime.  I delay going to bed (evidenced by the time I am writing this missive (1159 pm).  Bed does not bring deep sleep or restorative rest.  It brings searing pain throughout my body about every 2-3 hours.  My hips and lower back are the most aggravated, but anywhere between my knees and the middle of my back are open game.

When I am lying down, I feel trapped.  I don’t have enough sensation anymore nor enough strength to lift my butt to then turn to either side.  I will it from my head, try to squeeze the muscles, and nothing happens.  If I want to turn over, I must reach my hand across the bed and pull my body sideways starting from the shoulder. And getting up from the bed starting in a seated position is the worst moment of my day and night.

I watched “Under Our Skin” this past Sunday evening and saw a man trying to get up from the bed with his wife pulling on him.  I was in that man’s body.  It was so painful to get from sitting to standing.  But once I’m standing and taking some steps, the pain will lessen enough that I can get ready for the day.  But if I can’t get out of bed, then I have no choices.

So I avoid going to bed so I can avoid having to get up out of bed . .  .

I also realize that I may be stretching my muscles for 20 minutes every morning for the rest of my life.  But if I don’t stretch, I may not get out of bed.

I am going to try physical therapy to see if I can get that feeling back and get the muscles activated again.

And I have to find a way to get horizontal for 30 minutes in the middle of the day. Of course, no one has turned down the idea of bringing in a cot to the office . . .

Ok, enough babbling for now. . . .