So after totally inundating myself with information, and then cleaning up the mess after my brain exploded all over my desk, I finally called my mom.  My mom is, well, my mom,  but she is also an RN who has been nursing for over 35 years.  She’s had the formal training, but unfortunatly a giant majority of her nursing time has been spent in the psych ward, so while she gave me her opinio, she insisted that I talk to my step father about it.  So she called him and had him call me. 

Initially when I told him of my dilemma, he immediately went full Portacap (chest thingy).  He explained both procedures to me, and took into account my lifestyle in his recommendation.  The Portacap isn’t exposed (unlike my previous assumptions) so the risk of infection is crazy-reduced.  It’s actually inserted underthe skin and virtually undetectable, except for the little scar opening to put it in.  The needle that is used pierces the skin to access the cap.  The PICC line, on the other hand is “like two half-straws dangling from your bicep” all. the. time.  So there is the risk of infection, sepsis (that nasty thing you can DIE from), and of course there’s the aesthetics of it, even with a sleeve to cover.  So he was all about the chest port…until I mentioned that my needle would remain in me for a week at a time since the plan is for once or twice daily infusions.  Would that be an issue with my kids?  With my activity level?  Which, granted isn’t the highest on a 1-10 scale, but still…  At that point, he reluctantly changed his recommendation.  He was thinking on a dialysis point of view, where treatments are two or three times a week, so the needles are removed after each treatment.  He admitted the whole needle-sticking-out-of-my-chest thing was a little more risky than the PICC line, so yeah, go with the PICC.   And then he proceeded to tell me in VERY. DETAILED. INSTRUCTIONS. all the things I will do and need to do and should do and shouldn’t do, yada, yada, yada.  Don’t get me wrong.  I totally appreciate the information and advice.  Small doses are better for me at the moment though.  My memory is, well, non-existent at the moment. 

Seriously.  I have to write notes to  myself on my hands during the day.  Hopefully between washing my hands in the bathroom and getting back to my desk I can remember what it is I washed off so I can rewrite it.  And then I count on Mr. W seeing it when I get home so I will actually remember what it is I needed to remember.  Yeah.  It’s like that.  I can’t even remember how I started this post.  The fabulous Girl from the Ghetto left me some comments on a couple other posts from late last week (I think) and I had to go back and read my posts because I had no idea what she was talking about!  Yeah, that bad.  Losing your mind really sucks!

Ok, I re-read what I started this post with, and in case any of you are wondering, I’m aiming for the PICC line.  It makes more sense for me, and it’s technically the short-term option, and I’m holding on to the hope that this will be a short-term treatment…hope, hope, hope…  Of course, that may all change when I see the surgeon on Monday for my consultation, or my veins collapse during the procedure, or I throw up all over the nurse during the procedure…  In case any of you are totally twisted interested enough to want to see what is going to happen, search “PICC LINE” on Youtube.  There are oodles of videos of people actually getting it done.  Strangely, I couldn’t watch.  Normally that sort of thing doesn’t bother me, but something about knowing I was actually going to have it done made my stomach turn in a way I’ve never felt before.  Of course, stranger than that is that there are actually VIDEOS ON YOUTUBE OF THE PROCEDURE!  Freaky! 

Oh, one other symptom I don’t think I’ve mentioned before: Floaters.  In my eyes.  I’ve always had them, but now, they’ve gone all bunny-like on me and there’s like a million little floater babies and aunties and uncles and grandparents.  It’s a freakin floater family reunion in there!  Makes staring at a radar screen and discerning between an airplane return and something in my eye a little difficult.  Plus my vision has been cycling in and out of fuzzy for weeks, so, yeah…

And because I can’t remember if I’ve ever posted all my symptoms for all you lovelies who care (or don’t, but you’re still reading, so yeah), here is a rough list:

• stiffness and cracking in my neck and shoulders
• joint pain, started with the knee, now in every joint
• (see above) arthritis-like stiffness and pain in my fingers and toes (typing sucks. writing is worse)
• headaches
• insomnia
• floaters (in the eyes)
• fuzzy vision
• acid reflux
• migraines (not to be confused with headaches, two TOTALLY different animals here)
• short term memory loss
• long term memory “issues”
• “brain fog” ie. forgetting why I went to the fridge by the time I get there, forgetting names, can’t find words, using wrong words, spelling simple words wrong, lost thoughts, inability to concentrate, inability to take in information, etc, etc, etc
• “urinary issues” ie, I need to pee constantly, or can’t pee
• mood swings
• depression (esp. post-partum)
• anxiety
• body pain that feels like it’s in the bone (not an official symptom name, but I can’t remember what it actually is)
• heart palpitations
• indigestion
• “bowel issues” (yeah, not going there)
• nausea
• vomiting
• fatigue
• muscle weakness
• muscle spasms
• muscle pain
• can’t hear (or maybe I just can’t decipher, but either way, most of the time I have  no idea what’s going on)
• constant ringing in my ears

I’m sure there are more, but have I mentioned?  I can’t remember shit!  Seriously.  I had to go back to see if I had written insomnia 5 symptoms after I wrote insomnia!  Blah!

Update: There are things I left of the list that are just a little to personal to post.  And there was something I wanted to add, but went to the bathroom after publishing, and subsequently forgot by the time I got back to my computer.   Also, I forgot to title this post.  This. totally. sucks!

Tags: Lyme disease

This entry was posted on Tuesday, October 20th, 2009 at 12:31 pm and is filed under Lyme disease, depression, health, insomnia, mental, physical, stress. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.