Sunday, January 1, 2012

Lyme Update

I thought I would post this photo of my what my Friday morning routine looks like when the IV nurse comes to draw blood and change my PICC line dressing.

I'm holding my own for now. I saw the Lyme specialist on Friday. We (she) is doubling my dose of IV Doxycycline and adding in 2 more oral antibiotics. Since I had such a bad Herx reaction a year ago on IV Rocephin she is taking it slow. We did a few months of oral antibiotics, eased into the IV and now we pull out the big guns. I learned my brain lesions were in my frontal lobe. Well that explains a lot. She told me to prepare for some days of suckiness.

A few things have improved. My pain level is a bit better, I'm walking a bit better and I don't get chest pain and palpitations 24 hours a day now. I haven't had a Bartonella/Lyme rash in over 2 weeks. Small blessings but at least I know the meds are starting to work. And my kidneys and liver are so far holding their own and not protesting too much from all the meds so I guess that's good too. How frustrating though that it's been 5 months of various treatments and the meds are JUST starting to work.

Things that have worsened are my headaches and I'm having tremendous difficulty with processing, word finding difficulty and following conversation. I forget words and transpose letters in typing. Yesterday I could not make a coherent sentence. It was kind of frightening in a "I'm having a stroke" sort of way.  My typing skills have also deteriorated. Blog posting is painful and tiring. My vision has also significantly worsened, much worse after my IV dosing. My brain feels swollen.

 It perhaps is.

I'm tired.

 It's a tired I can't explain to people other than to say, "Run a marathon...then do it again as soon as you finish."

My family is feeling the stress of doing what I cannot. Laundry, chores, running errands, my crankiness and mood swings. It's a life change for all of us. I'm grateful for them.

2012 has arrived. I am fighting this. I have to. It's taken up too much of my time and my life. I will endure what ever suckiness it feeds to me. I am stronger than this. I will be stronger than this.


1 comment:

Jess Sanna said...

Bev, you are an amazingly strong person. I can't imagine what you're going through, but you seem to be handling it so well. I'm in awe of how you're doing with all this. And thatnks for sharing your story; I know it's not always easy to open up, but you're sending a really inspiring message. Thank you for that.

Sending hugs and happy thoughts,