About two weeks ago, my lymph nodes in my neck started to swell.  Totally a normal thing for the Lyme, so no worries, right?  WRONG!  While the one on the right stayed around about the  normal size of a regularly swollen lymph node (you know, grape sized) the one on the left continued to grow.  I mentioned it to my nurse on her normal weekly visit, who promptly replied with (surprise, surprise) “yeah, that’s a normal Lyme thing.”  Ok, no biggie. 

By the next Monday, a week ago, I was feeling pretty run down.  That left lymph had reached the size of a small egg, and was visible to the naked eye, but only after being pointed out.  But I was stuffy, so I figured head cold, no big deal.  Annoying, yes, but worrisome, no.  Tuesday, was worse.  By the time I got home, I was seeing double and wanted nothing more but to lay down.  Forever.  My nurse came over Wednesday, promptly noticing that I did not go to work, and after donning her protective mask (always a good sign!), checked me out.  The left lymph was now a medium sized egg encroaching quickly on the large.  I assured her I had no intention of going to work any time soon, so she did her thing (blood draw, checked my symptoms, temp, blood pressure) and left.  Thursday brought my monthly check up with my doc.  By 2pm, the left lymph was lime sized (ha, ironic huh?) and very visible.  Besides that, Wednesday evening onwards it had been pushing so hard on everything else that should fit quite comfortably in that region of my neck that my teeth, inner ear, jaw, and throat were throbbing with pain.  The doc checked me out and was visibly concerned.  My earlier (completely stupid, overzealous, and morbid) Internet research of swollen lymphs being the first sign of lymphoma all over his face. 

He gave me a shot of cortisone in the upper hip, which by the way really freaking hurts!  And wrote me three new prescriptions: Prednisone, Valtrex, and high dose potassium (apparently the antibiotics are lowering my potassium levels…hence those weekly blood draws) and told me to take a 4 day break from my IV therapy to let my body recover.  I had more blood drawn in the office to check for lymphoma, another Epstein-Barr panel, and whatever else may be going on in there, and headed home and back to bed. 

Friday I woke up feeling somewhat normal, that is, until I tried to eat.  Pepperoni pizza and Mt. Dew.  Except I couldn’t taste anything.  I could smell it.  I could feel the spice of the pepperoni on my tongue, but no taste whatsoever.  WTF, man?!  So I left a message at my docs office to see what was going on, which was later returned with an “oh that’s normal.”  Ok, great.  (My taste did return by Saturday morning)  I had to take th boy to meet his dad for Christmas on Saturday, and with the projected snow, we decided to drive up Friday night, spend the night, and come home a little earlier on Saturday.  Not needing to do any infusions til Monday, I packed my stack of pills, but did not bring my IV supplies. 

Saturday morning we woke to fluffy white mountains of snow, and falling snow, and blowing snow…you get the idea.  We dropped the boy early, ate breakfast (mmmm…Cracker Barrel) and headed out at about 1030 for our short 3 hours drive home.  Yeah, right.  While the roads were clear of traffic, another round of blizzard came through in the early afternoon and by 3pm the plows had given up clearing snow from the highways and the visibility was so bad we were forced to find a hotel for the  night, 2 hours from home.  Not such a bad thing under normal circumstances, but…

The doc also recently put me on Vyvanse, an mild ADHD medication to help with my Lymie brain fog.  It works great for that, except that it also makes me TOTALLY WIRED for about 20 hours after taking it.  Also, the steroids (prednisone) make me jittery, and being in a heated vehicle for two days, driving under stressful conditions had completely dried out and worn out my body to no end.  So I was totally wasted physically, but completely wired mentally.  Not a good combination for rest. 

Then I noticed, my tube was fairly, uh, empty. 

Normally, my tube, the 6 or so inches of tubing that hangs out of my chest from my catheter, is full of heparin (blood thinner) between IV infusions.  Being a “Groshong” catheter, it is specifically designed to be self-sealing, nothing in, nothing out unless there is pressure placed on the valve, like from a syringe pushing fluid or pulling blood.  That is the point of the thing.  So if there is nothing in my tube, specifically only 2 inches worth of fluid in the 6-ish inches worth of tube, where the hell did it go?  At home, I probably would have just flushed some saline through and called it a day, but, I didn’t bring any saline.  And I was snowed into some out of the way hotel in the middle of who knows where because there is a million feet of snow outside.  So now what? 

When we finally got home Sunday afternoon, the mere 2 inches of fluid that were in the tube were completely gone.  I called the 24-hour nurse hot line, trying not to panic in front of Mr. W and his sensitivities to all things that may cause me pain or discomfort.  The nurse on the line was utterly confused.  Not in the confused way that he was inept, but in the confused way that it’s not supposed to ever go dry.  No matter what.  It’s designed that way.  That’s the freaking point of the thing!  So he told me to clamp my tube as close to my body as I can, and a nurse will be out to check it in the morning.  Meanwhile, if I have any weird feelings, especially in my chest, head to the ER.  Ok, yeah, that will help me sleep.  Thanks.  Oh yeah, and in “clamping my tube close to my body,” that has basically resulted in the clamp, roughly the size and shape of a pair of kiddie-scissors across my chest, held in place with two ace bandages wrapped around my upper body and a sports bra.  On the inside, things are digging and pinching and just plain uncomfortable.  On the outside, I look like I’ve sprouted a third, rather misshapen boob in the center of my chest, slightly higher than the other two.  Luckily, I’m fairly un-endowed in the boob department, so it could be worse.  I suppose. 

I spoke to my nurse this morning, and she talked me through drawing out the air, so I’ll be trying that later on this afternoon.  And the adventures in Lyme continue…

I’ve been playing hooky from my blog lately.  Not exactly sure why.  Maybe I’m tired of whining about how I feel.  Maybe I’m having some guilt about blogging when there are a MILLION other things I should be doing that I’m just not.  Maybe I’m being lazy.  Whatever it is, maybe I’m over it.  Maybe I’m not. 

So how do I feel I (don’t) hear you ask.  Well.  Lyme disease sucks.  It really does.  Physically, I have more bad days than good days.  There is pain, pretty much everywhere.  Some days it’s not so bad.  Some days it’s excruciating.  Think of a body part…yeah, it hurts there too.  So that’s fun.  Also, there is the “floaters,”  the harmless little black lines and spots everyone has in their eyes from time to time.  Only, mine are multiplying like horny rabbits and are always there.  Seriously, the words on my computer screen are dancing right now.  It makes reading anything very difficult.  And a new addition to the eye thing: now there are white, or bright spots along with the black spots.  It must be similar to what celebrities see after being flashed with a thousand flashbulbs on a regular basis.  My ears, constantly ringing.  Constantly.  It’s like after going to a really good rock concert, only I don’t get the perk of actually going to a really good rock concert.  It makes me very sensitive to sounds.  Annoying sounds are that much more annoying.  Loud sounds are that much louder and more grating.  Even whisper sounds drive me nuts.  I’m seriously craving a sensory deprivation chamber right about now, but all my problems are internal, so that probably wouldn’t work anyway.  I’m nauseous, and my appetite fluctuates between famished and I never want to eat again.  I almost always have a headache.  At the moment (I think) I am developing a nasty cold, since I’m stuffy about 50% of the time and there is a golfball-sized lump where my left lymph node should be in my neck.  My hands and feet swell randomly.  I’m tired and achy when I wake up in the morning, every morning.  After my shower (at $5 per shower thanks to needing a 6×6 tagaderm patch just to take a shower…gift ideas anyone?) and coffee, I am fairly awake for about 2 hours, then back to sheer exhaustion until I finally make it to bed at night.  I have cotton mouth pretty much all the time thanks to the pain meds, which don’t full work.  I get horrible stomach and muscle cramps thanks to the antibiotic infusions every 12 hours.  And now I’m on ADHD meds for the severe memory lapses and brain fog, so who knows what kind of side effects that will bring.  The antibiotics are also bringing about all the “normal” antibiotic side effects: candida, indigestion, digestive issues, upset stomach, etc, etc.  Probiotics are holding it off to a tolerable level, but then that just adds another couple pills a day to choke down.  Yea! 

Then there is the emotional stuff.  Long term pain = depression, of some sort or another.  I’m cranky most of the time, which I very unfairly take out on Mr. W (who is taking this all very well considering) and my kids, unfortunately.  (If only the ex-men would call more often to take the brunt of the crank!)  I’m feeling extremely unattractive, undesirable, un-everything thanks to a new, very short hair cut that I’m really  not liking (the showering thing, it only made sense to make my “getting ready” routine as easy as possible),  the bloat/weight gain that makes it difficult and uncomfortable to get dressed in anything but sweats, and, oh yeah, there’s the 4 inch long tube sticking out of my chest, just above my left boob, which requires wearing a sports bra to bed every night, and I’m already pretty flat in that area.  Like I need the extra compression.  My upper body has become a no fly zone, and with my flat-chested sports bra “lingerie” and my extremely short hair, I’m feeling more an more like a boy in the bedroom.  Not so great for the “mood,” at least on my part anyway.

Aren’t you glad you asked? 

Beyond the Lyme, I’m prepping for Christmas, which incidentally will be held over New Years in my house as the kidlets are with their dads this year.  Money is tight, but on-line shopping has provided me with some fantastic deals over the last couple months.  Yea for being proactive in something. 

Mr. W got a new job, starting just after Christmas.  Fortunately it’s like a 40% pay raise and in the field he loves.  Unfortunately, his office is about a 1 1/2 hour commute each way, even with public transportation, and his hours may be sporadic due to the type of work he will be doing.  So he won’t be home much during the week.  But we will be moving somewhere near the middle in the early Spring, and hopefully his new connections up there will throw out some info on jobs in my field of work and then we can move all the way up there.  I’m not planning on changing jobs any time soon…well at least until after I A) graduate, also early spring, and B) get the tube out of my chest and resolve all of my health issues.  “Nice to meet you on my first day of work.  By the way, I’m going to need to work a half day once a week so I can meet my home nurse, and I need at least 2 days off a month for doctors visits, and will probably average 1 other day off a week for just general sickness, and that doesn’t even touch any kid-related time off…thanks for the job.”  Yeah, I’m sure that would go over well with a new or potential employer. 

And speaking of new jobs, one of my best girlfriends is starting today at her new job, here, with me.  Yea!!  We met briefly in basic training (different squadrons there), and went on to Tech school together.  Although we were in different classes for the same career field, we had the same circle of friends and lived in the same hall.  We went to our first base together and managed to work out being roommates there.  Our friendship didn’t do so well in the dorm setting.  She was a party girl and I grew tired of that pretty fast as I was more interested in boys, and yes I do mean boys.  Looking back, I had pretty shitty taste in males!  I married ex #1, despite her loathing of him and warnings about him.  I even left her off the guest list to our wedding.    Anyway, we both eventually transferred and went on with our lives.  You know my story.  She went over-seas.  Grew up a lot.  Had a son.  Moved back stateside, and we reconnected about 5 years later, our friendship re-growing on a much more adult level.  Long story short, she was looking for more security for her and her boy, and my office was looking for more reliable new employees.  I introduced the two and wa-la.  She starts today.  All around, it’s great.  I have a close friend who is actually geographically close.  My kids and her son get along great, and they all have had a shortage of “at home” friends up to this point in their lives.  And she’s getting the security and benefits she needs for her and her son, while working decent hours.  I get a reliable, hard co-worker among a group of (mostly) assholes and slackers.  Win-win-win all around!

So that’s that.  I’m successfully dizzy from watching the letters dance on my screen, my fingers are starting to tingle from actually using them.  And I need a smoke and a coffee refill.  Oh, yeah, and I should probably get to at least one of those previously mentioned MILLION things I need to get done, like, yesterday.

Just in case I slack on the blog again for a while…