Happy New Year!

So I’ve been slacking on, like, everything.  Seriously.  EVERYTHING.  And I need to stop.  I can make a buh-gillion excuses as to why I’ve been slacking, but it all comes down to this: 

I’m still slacking. 

And it needs to stop.

So my New Year’s resolution?  To stop slacking, of course!  I know, I know.  There is all the well-intentioned advice out there about not making vague resolutions.  “Be specific and you are more likely to succeed,” they say.  Well, “they” aren’t me, so…yeah.  Besides, I can be specific in my Ways Of Not Slacking, or WONS for short.  You know, like “wins” but in the past tense so it’s like I’ve already won.  Positive thinking at its best!

My things to end the slack on, or WONS:

• Smoking.  I need to stop the slack on quitting smoking.  Nuff said.
• Medicine.  I need to stop the slack on my meds.  I’ve been so busy trying to pretend I’m not sick that I’ve all but given up on all my “feel better” supplements and stuff.  And guess what?  I’m not feeling any better!
• Organization and planning.  I need to stop the slack on being organized.  There is one more class until I graduate, a move, and a wedding in my near future and if I’m going to get it all done without landing in the loony bin, I’m going to have to do some serious brushing up on those O and P skills.
• Speaking of the wedding.  I need to stop the slack on wedding planning.  With the recent addition of my dear friend and maid-o-honor, C, to my locale, the wedding planning, or lack there of, has been coming up in conversation a lot.  9 months, no budget set, no venue, no dress, no plans.  oops.  Well, at least I know the colors…maybe…possibly…
• Sleeping.  I need to stop the slack on my sleep.  I should be getting at least 8 hours.  It would be better if I got 9 or 10, under my present health condition.  I’m lucky if I give myself 6.  It’s gotta stop! 
• Name change.  I need to stop the slack on changing my name.  While I won’t be changing my name to “Mrs. W” when we get married, I should probably complete the name change process from my last marriage, which officially ended, oh, about 9 months ago. 
• Nutrition.  I need to stop the slack on good nutrition.  My kids need it.  I desperately need it.  Mr. W needs it.  Healthy food makes for healthy, happy bodies, makes for healthy, happy minds, makes for healthy, happy people.  I can do it…and so I must.
• Me.  I need to stop the slack on me.  I need to stop doing the things that make me feel like crap (smoking, not resting enough, getting behind on everything, eating like crap) and start doing things that make me feel good (supplements, acupuncture, massage, exercise, meditation, eating and sleeping well…hell, even getting a pedicure if it will make me sit and rest for an hour!) 

It’s a full circle.  If I can concentrate on the little bits, the overall picture will get better.  If I can work on me, all those around me will reap the rewards.  A rested mommy wants to play more.  A happy fiancee d0esn’t bite your head of for little no reason.  An emotionally sound friend can be there when you need her.  A healthy daughter can save leave for vacations and visits instead of using it on sick days. 

The guilt of how I’ve been treating my loved ones weighs heavily on me.  The guilt of how I’ve been treating myself does too.  If I can stop the slack, just one small thing at a time, the “WONS” will really be WON!

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…

I got it!  I got it!  I got it! 

The newest addition to our technological family arrived on Friday afternoon, after a long day of waiting by the door, checking the door, opening the door to see if anyone or anything was there, checking the doorbell to make sure it still worked…and then I saw it.  The glint of the sun reflecting off the white of the Fed Ex truck.  I ran to the door to greet the wonderful Fed Ex lady as she held it lovingly in her arms.  And it was huge! 

She was nice enought to bring it in the house for me because at 31 lbs, I can’t lift it.  Which means I couldn’t take it out of the box and do a naked worshippy dance for it…or, you know, just set it up and play with it…either one. 

So, the specs for the geeky types:

• 27″ Backlit, widescreen LED iMac  Yes, I did say 27 inches of LED fabulocity!
• 3.33GHz Intel Core 2 Duo processor with 6MB shared L2 cache
• 8GB (two 4GB SO-DIMMs) of 1066MHz DDR3 SDRAM
• 1TB 7200-rpm Serial ATA hard drive
• ATI Radeon HD 4850 graphics processor with 512MB of GDDR3 memory
• Built in iSight camera, mic, stereo speakers, wireless, bluetooth, Ethernet…you name it!

In the box:

• iMac
• Apple Keyboard w/ Number pad (I couldn’t do the wireless because I need the number pad on my keyboard) 
• Magic Mouse (the most amazing mouse ever!)
• Cleaning cloth
• Power cord
• Install/restore DVDs
• Printed and electronic documentation
• Apple Remote

And for the Greenies:

• Arsenic-free display glass
• BFR-free
• PVC-free⁵
• Highly recyclable aluminum and glass enclosures
• Meets ENERGY STAR 5.0 requirements
• Rated EPEAT Gold⁷

And I call him Mr. Wonderful!!  Yes, Mr. W ordered it for me, and took care of all the upgrades to make it just what I want!  I am such a lucky girl!  He set it up for me Friday night too, overwhelming my now seemingly little desk with the iMac’s massiveness and fantasticness!  It’s. seriously. HUGE!  And the “Magic Mouse” is the coolest mouse ever!  (ok, let me pause here to apologize about my overenthusiasm for exclaimation points in this post, but I’m a little excited over the whole thing, so bear with me.)  The “Magic Mouse” works kinda like the touchpad on the MacBooks, for those of you who know how they work anyway.  It’s a thin, wireless, bluetooth, optical mouse with only one button which covers the whole surface.  You can program it to use a single button, or two buttons, which just means you push the right-ish or left-ish side of the mouse to make it respond.  There is no scroll wheel.  Instead, you just scroll your single finger up and down, or left and right on the  mouse for scrolling.  Also, there is a two-finger feature which allows you to flip through web pages, photos, even andvance/rewind video by sliding two fingers horizontally across the mouse.  Oh, and you can zoom your screen by holding down the cntrl key and single-finger scrolling up or down, which is really handy when your monitor is 27 freaking inches and your web pages insist on remaining normal web page size and you can’t figure out how to maximize your window because it’s technically not a window since you are on a Mac OS and not on Windows, but it looks just like a window, but different, and totally doesn’t behave like a window…*whew* sorry about that…just some change-over frustration there…but totally worth it!

Here’s the “Magic Mouse”

It really is a fantatic and aesthetically pleasing little thing! 

And without further ado…drum roll…here he is:

In the box

And on my (seemingly small) desk

 

Mr. W and I have been together for two years, give or take a couple days/weeks/…  Ok, so we don’t know the exact date of our anniversary, and by this time next year we will be married (or at least that’s the plan) so it doesn’t really matter in the grand scheme of things sort of way.  We went out on our first date sometime in November, before Thanksgiving of 2007, and ended up officially together at some point thereafter without even really realizing it.  So the anniversary day is all sort of fuzzy.  Last year, he was in Iraq and sent me surprise flowers for our one-year.  (Awww, ain’t he sweet?!) But this year…this year is different.

IT’S LIKE PULLING FREAKING TEETH TO GET HIM TO AKNOWLEDGE THE THING!

What is it about men?  Seriously, there are a couple times a year you guys have to suck it up and pretend (convincingly, convincinglyis important!) that you are into all that relationship-y mushy stuff:  Valentine’s Day,  birthday,  anniversary, and possibly New Years Eve (you know, the kissing thing at midnight…which I’ve never done coincidentally…).  That’s basically it.  Four events a year to feign excitement for.  FOUR!  I mean, I get it, ya’ll aren’t into it.  “It’s just another day.”  “It’s just a holiday for girls.”  “It’s something Hallmark and the chocolate people made up to make money.”  Whatever!  Suck it up and tell her you love her already.  Do or say that thing you know makes her weak in the knees and all fluttery in the tummy.  You know what it is.  Besides, you’ll probably get something out of it in the end anyway. 

We sort of picked a day last year which ended up being the day he sent flowers.  Made sense.  Of course neither of us kept track of the day, so this year I’ve made several attempts, in vain, to pin down a day for “us,” for celebration.  Mr. W keeps insisting on Thanksgiving, but:

1. I don’t want to share “our” day with any other National holiday.
2. Thanksgiving isn’t the same date every year.
3. You can’t go out for a romantic dinner on Thanksgiving because if family doesn’t happen to be involved in your plans, the local Chinese fast food place is probably going to be the only option.
4. We are spending Thanksgiving this year with his family, after a long road trip to Michigan, with four kids in the car, at a hotel, with same said four kids…not so romantic to me.  And it’s all about the romance, DAMMIT!

Very rarely am I that “girly-girl.”  But, I do like me some romance from time to time.  I’m allowed.  I make up for it in other ways.  I’m not going to list those ways right now (or probably ever) but just trust  me, I do make up for it.  And now I’m at my very familiar, too familiar, annoyingly familiar crossroad:  Do I hold out and demand what I want, or do I just say F*%@ it and give up?  With everything else going on in my life, I’m tempted to hold out for at least one thing…but who am I kidding?  With everything else going wrong in my life.  Disappointingly, dishearteningly, disgruntled-ly wrong…I’m most likely going to go with the latter, you know, for consistency’s sake. 

*sigh…*

update:  Shortly after posting this, I got an email from the folks at homeaway.com.  The subject line was this:  “Re-Ignite the Passion with a Couples Getaway.”  Hmmm…have they been reading?

It’s been awhile, I know.  A lot’s been going on though, ya know.

I got my catheter “installed.”  Not sure how else to put it.  The surgery was uneventful.  Well, as far as I know, but then again I was in what they called a “twilight sedation” so I have no clue what happened during that hour, or for a couple hours after apparently.  Mr. W said I was pretty out of it and has reminded me of a couple conversations I had after I thought I was aware, but apparently not so much.  It’s no big thing really.  And literally.  Basically, there is a normal sized IV tube entering my skin about 4 inches below my collarbone.  There is a winged plastic tab at the insertion site which is stitched to my skin there, but my nurse explained yesterday that this really isn’t necessary, and actually more of a nuisance for cleaning.  She suggested I have my doctor remove it in a couple weeks.  There is a cuff of sorts at the site, on the inside, which is designed so that my skin actually grows into it, providing a barrier to the outside world.  Pretty cool stuff.  The IV tube is tunneled under my skin and up about 3 inches, where there is another incision site.  This is where the tube actually goes into a vein, and continues down towards my heart.  All in all, it’s not so pretty, but really not that bad.  Of course, there is about 6 inches of tubing coming out of my chest, the end of which has a fairly large nozzle-y thing which is what I connect to my meds during my infusions. 

The infusions are simple.  I push 10 ccs of saline from a pre-loaded, needle-less syringe.  Then the antibiotics.  The image of IV antibiotics is a pole with a bag that works on gravity, forcing you to be stationary for as long as it takes for the bag to empty.  But oh the amazingness that is modern medicine!  I have these “accu-flo” antibiotic balls that are just fabulous.  Well, as fabulous as being on IV meds can be.  I hook it up to my little nozzle thingy, flip the clamp, and the pressurized ball pumps in the antibiotics at whatever pre-set rate.  (In my case, 100mL over 30 mins)   Once connected, I can get up, move around, do whatever instead of being tied to an IV pole.  After the antibiotics, another 10 ccs of saline, followed by 5 ccs of heparin, which apparently stays in the tube to ward off any blood-clots or blockages, but which also apparently I don’t need to use since I have a Groshong catheter which is specifically designed to not have clots or blockages, thus avoiding the need for heparin flushes.  Hmmm…doing it anyway…at least for now.  Of course there is lots of hand-washing and hand sanitizing and alcohol wiping going on all along the way.  But all in all, no biggie.

The hardest thing about all of this is logistics.  The whole process takes about 45 minutes, give or take an extra hand-washing.  Plus, the antibiotics are stored in the fridge, so have to be removed and warmed to room temperature naturally, 4 -6 hours prior to use.  Also, I do two a day, 12 hours apart.  I’ve been doing 9am/9pm, which means I take one dose out of the fridge at 5am when I first get up for the day, but then have to do that dose at work.  Also, on the weekends when I’d like to sleep a little later, I still have to set my alarm for 5am just to take it out of the fridge.  The nurse said I could take it out the night before, stretch the extra 2 hours for 8 hours of sleep (uh-huh, sure I get 8 hours) and do it in the morning.  But that means I have to add 45 minutes to my getting ready for work, so I have to get up at 4ish instead of 5ish.  YUCK!  Also, that means I actually have to be awake at the crack-of-freaking-dawn on the weekends as well in order to maintain that every-12-hours-constant-levels-of-antibiotics-in-your-system thing.  Yeah, still working on that one.

Also, I CAN’T SHOWER!  Don’t worry, I’m bathing.  In a bathtub.  Which I hate.  Nothing like sitting in your own filth!  Plus the bottom of you is wet and warm, but the top of you is dry and cold, and the water doesn’t stay hot…or clean…yeah, not a fan of baths.  They do make waterproof sleeves for PICC lines, but those are for arms and legs.  You can’t put a sleeve over your boob and expect it to keep water out.  I’ve tried the plastic wrap and tape combo, but the pesky area between side-boob and armpit just doesn’t cooperate.  It’s kind of foldy and stretchy, so tape doesn’t want to stay put with movement and water in the mix, and one handed hair washing just doesn’t work. *hrumph*  To remedy the hair washing thing, I chopped it all off.  So much for growing it out for the wedding!  This way I don’t have to wash it every day.  When I do wash, or should I say Mr. W washes my hair (and I call him Mr. Wonderful!), the short hair makes it significantly easier.  He is very good at it and I’m loving every second of the pampering at his hand, but he’s bald and has been for years, so has very little familiarity on what it takes to get long hair actually clean and conditioned.  Ah, well.  They do make very convincing hairpieces nowadays…

Beyond all this, I “shouldn’t” pick up my kids (uh, yeah right) or exerting myself with lifting or stretching or anything like that.  And there is the wardrobe thing. 

I gave up on hiding it immediately after the thought crossed my mind.  What the hell for?  I’m not ashamed.  Yeah, I have an illness.  So what?  It’s not like I can help it or I did something bad.  So what if people look and wonder.  Ask away and I’ll be happy to share!  I do keep the actual insertion site covered, mostly, just because it seems to gross people out a little.  But my happy bandage is out there for all to see!  But then there is the matter of the tube.  I don’t really care about it’s visibility, but the comfort level is different.  See the head of the tube, the part where I hook up my meds, it’s rather bulky.   I imagined just tucking it all into my bra, but, no.  That’s just not comfortable at all.  Hanging isn’t an option really.  It’s 6 inches of tubing with a 2 inch nozzle on the end.  Not practical.  I have figured that tops with a built-in shelf bra seem to work out.  I’ve got two tank tops like that, which I’ve been wearing under everything.  But, alas, it is winter, and the tanks have gone off the shelves at the store in favor of warmer clothes.  Dammit!  But then there is Victoria’s Secret!  Ah, Vicky!  Making my life a little better, one under garment at a time!    Victoria’s Secret has these “bra-tops” which I normally hate because the “bra” part is nothing near as fabulous as their normal bras and I just have to wear a normal bra with it anyway, so why bother?  But, they do all have that handy shelf part that perfectly holds my nozzle-y thing in a semi-secure area, without digging or pinching or anything!  And wa-la…another reason to shop! 

So there is some silver lining, I’ll admit it.  Oh, yeah, and eventually (I’m going to have this for at least the next 4 months) I will get better.  But until then, I’m sure there will be more bitching about it. 

 I apologize in advance.    

At least I talked about boobs and under-garments too. 

Your welcome!

The so-called “honeymoon phase” of a relationship is a grand and wonderful thing.  Everything seems to fall away in the presence of, or even a mere thought of that new(ish) someone special.  One can easily pass hours, days, weeks without even realizing.  Time is easily filled with just being together.  *sigh* And how long does it last?  I guess it’s different for different people in different situations.  I suppose it could easily go on for years with a young couple in the prime of their lives and careers, with no kids or severe responsibilities.  When talking and love-making are all that’s really important. 

Someone recently told me “you can’t stop the Earth from spinning.”  It’s true.  You can’t.  I’ve tried.  Oh, to hold on to those honeymoon times forever.  To shed responsibility and live in the rapture that is new love.  It feels almost as if the Earth has stopped spinning for those moments…almost.  But in the end it all comes back into focus in jarring reality.  Life does in fact go on, and responsibilities still sit at your door and wait for you, no matter how long it takes for you to come out. 

Mr. W and I have a fantastic relationship.  In the beginning, we were fully enchanted with the honeymoon stages of things.  Responsibilities fell away and things like sleep just didn’t feel important.  Of course, this was also before the boy started school and my kids were still on the 2 weeks here, 2 weeks there rotation, so, no, I did not totally cast off all responsibility for a piece of ass, thank you very much.  Anyway.  Right around the time we moved in together and he left for Iraq, all that slowing of the Earth on its axis snapped back with full force and we’ve been struggling to recover ever since. 

There are: kid issues, health issues (oh, my are there health issues!), a need for sleep that can’t be ignored, insomnia (on both our parts), schedules with my exes, schedules with his ex, schedules with work, schedules with family, pets, holidays, time off, sick time, working, college, schools, housework, yard work, financial issues, stresses from all sides, creative transportation arranging (i.e. carting kids here and there), doctors appointments for 6 different people, dentist appointments, braces, learning to drive, buying a car, buying a house, selling a house, moving, storing, decluttering, organizing, Christmas shopping, dinners, lunches, groceries, cooking, planning, exercising, not exercising, great intentions and epic fails…the list of life goes on and on…and on.

It all seems to have come at once, knocking us square on our asses, struggling to regain our footing in the world, that damn spinning world.  But we are doing it together.  We are side by side in all of it, helping each other get a foothold here, dragging each other down as we slip there, but together through it all.  In the end, what more could you really ask for? 

I don’t think a successful relationship can be judged purely on happiness.  Seriously.  No one, no one in the world is 100% happy 100% of the time.  It’s not possible.  Unless they secretly found a way to stop the Earth from spinning and are happily living in one of their moments of happiness, but I highly doubt it.  The glory of life is it’s ups and downs.  How can you possibly know how good things are now if they’ve never been bad?  How can you know true happiness if you’ve never felt sadness?  How can you  know the true height of joy if you’ve never seen the true depth of despair?  Good and evil must coexist in order to be, so how could the same not hold true to the other pairs?  Mr. W and I have both been to the lowest of lows and have come out the other side fully ready to appreciate the high that is us.  We’ve had heartbreak and have mended each other’s hearts.  We’ve had despair and brought tears of joy to each other’s eyes.  We’ve been broken and have worked to put each other back together again.  That’s just how we roll. 

The best of the best?  We are just there.  Through the hard and the bad and the sad and the stressing, we are there.  No time in our relationship (so far) has been harder than now.  But we are still there.  All those things I listed above, all those responsibilities and “problems,”  yeah, we’ve got them.  Even without the added external stresses (kids, jobs, schools, etc, etc) we have quite literal “shit” going on just with us, or more to the point, me.  My Lyme disease = pain (physical for me, emotional for him), moodiness on both sides, stress, worry, and more stress, financial difficulty (yeah, doctors’ bills.  Gotta love ‘em!), and limits in just about everything, and really, who likes having limits?  But he’s there.  He’s here.  He stands by me.  Yes, sometimes he has trouble accepting his role of stand-next-to-er and tries to do that man thing of trying to fix everything.  But he’s working on that.  I can see where it’s hard to be helpless in all this.  To witness so much pain and suffering and not be able to do a thing about it.  I understand. 

And he tries. 

And we do it all together.  As best friends, as lovers, as soul-mates, as the most wonderful us we can be.  Together. 

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I’m getting my chest port/Groshong catheter put in on Friday morning.  I’m freaking the hell out!  He quit smoking already, for me, and for him, and for me.  He said he finally has a reason to want to live a long healthy life.  All together now: *awwww*    I’m quitting too, although not as abruptly, or successfully.  But it’s hard to quit when you are freaking the hell out about something less than a week away.  He gets it without my explanation.  He accepts my weakness and loves me still.  Would you still love me if I were 400lbs?  Would you still love me if I lost all my hair?  Will you still love me when I’m old?  Will you still love me with a 4″ long tube sticking out of my chest? 

Of course he will.  And I call him Mr. Wonderful!

I’m having so many issues dealing with the boy lately.  Well, we, as in the couple-y we, are having issues dealing with the boy.  He is whiny and disrespectful and totally ignores everything we say, repeat, scream-at-the-top-of-our-lungs.  He fights constantly over everything.  Eating, sleeping, getting dressed, brushing his teeth, getting in the car, getting out of the car, putting his coat on, putting his shoes on, drinking water, juice, milk, soda (yeah, I don’t give him soda but his dad does.  That’s where the fight comes from).  It NEVER. ENDS.  EVER. 

Yesterday I smacked him in the shower.  It was ridiculous.  I swear he was doing (or not doing) everything he possibly could to piss me off.  I swear he was doing it on purpose.  Ok, yes.  I realize he is 5 going on 6 and probably (definitely) doesn’t have thoughts that complex and vindictive.  But at 6 am, after days, weeks, months of fighting and yelling and threatening, it just really seems that way.  And at dinner last night, we took a trip to the bathroom to discuss what was and was not going to happen for the rest of the night.  It sort of worked.

I am battling within myself with all of this.  I am a daddy’s girl through and through, and I can’t help but draw from the parenting I received as a child.  My dad’s way of thinking goes something like this:  I am the parent and you are the child. Period.  You don’t argue with a child.  There is no option.  The parent talks and the child listens and obeys.  Failing that, the parent makes the child listen, even if it takes some additional “punctuation” to get the point across.  My visits to the bathroom with my dad were much less about talking and much more about punctuation, not-so-fondly referred to as “boot therapy.”  It’s just the way things were.  My dad gave it to me much kinder than he received from his father.  My grandfather was more of the closed-fist punch  now, oh, yeah, and no talking later.  I’ve heard that I was the first child he ever hugged…or smiled at…  He had 4 of his own.

I don’t want to spank my kids.  I’ve fought the urge with (mostly) success.  Mostly.  But some days, more often lately, it’s just, difficult.  How do you convince a 5 year old to listen?  It’s not as if you can use logic.  It’s not as if they will just trust that you know what’s best.  There is threatening, but even that comes up empty in the end.  What can I take, what can I do, how do I punish, or even better, how do we get past this to avoid any need for punishment in the first place? 

• Time outs: don’t work.  They sit, and then they get up and seem to forget those 4, 5, 6 minutes even happened. 
• Grounding: doesn’t work.  (see above).  Plus I hate it.  Ground one kid and the whole family loses from it.  No excursions.  No playing.  No fun. 
• Taking things that are precious:  doesn’t work.  (see above again)  Plus there is always something else to play with.  In a pinch, my kids can play with a sock and a pencil for hours.  They are just creative that way.

Obviously yelling and screaming doesn’t do anything.  It makes for tears and bad feelings, usually on the part of all parties involved.  And then it just happens again.  And spanking.  Just not an option.  When I’m in a pinch, I can usually use my words and logic to get the point across, to get someone to agree with me and do as I say.  Yeah, not so much with the kids.  So what is left? 

And the whole thing is draining.  I’m tired.  Mr. W is tired.  The boy is tired.  We are cranky.  We are stubborn.  We are not thinking clearly.  It all snowballs on itself, day after day after week after month.  We are being slowly crushed under the weight of the massive, growing snowball.  It just sucks.  It feels like we can’t even dig ourselves out at this point.  It feels like spring will never come to melt some of this weight.  It feels, bad.  All relationships are suffering.  Mr. W and I are fighting.  The boy wants to trade Mr. W in for a cat.  The boy thinks I don’t love him because he’s bad, no matter how many times I tell him I do, more than anything in the world I do.  Mr. W thinks the boy doesn’t like him, and the cat thing doesn’t help.  I’m trying to balance my relationship with the two men in my life while simultaneously balancing their relationship as a pseudo-go-between for them.  It’s all just so very draining. 

Help?

Trust is a strange animal.  Just when you think you have tamed the beast.  House trained it.  Gotten it to eat from your hand…it bites your hand right off.  Bucks you to the ground.  Mauls you in front of your friends.  Ok, so I had a moment.  Maybe I have many moments, but they most of them pass by without a second thought.  This moment, not so much.

Mr. W and I have an open door policy to all of our so-called private areas.  Head out of the gutters, folks.  Not those private areas (although we have that too) but the private areas like email accounts, facebook, my blog, bank accounts, phones (calls and texts).  Those private areas.  I know all his passwords and pins and what nots, and he knows mine.  We have no qualms about the other randomly checking in.  Honestly.  Honesty.  Full disclosure.  (it’s how we tame the beast.)  Most of the time, we don’t access what is openly accessible, because the animal is curled up on the rug in front of the fire snoring away in perfect tranquility.  Most of the time.  But something stirred for me yesterday…

We’ve been (he’s been) working with a lawyer to get “her” name off the deed to his/our house.  The paperwork came back yesterday, so I looked at it out of simple curiosity.  Yea!  Free and clear.  “She” is no longer attached in any way to our life.  As I scanned the page, I subconsciously, or maybe consciously…who knows, noted “her” phone number.  Minutes later, I realized that Mr. W had left his cell in my car charging.  Hmmm… So in the brief minutes of driving separately to IHOP for dinner* the animal woke completely and apparently wanted something to gnaw on…say, like my hand.  As I scrolled through recent calls, “her” number was there.  He called her.  Monday.  But why?  He hadn’t mentioned anything to me about it.  He always does.  Why? 

There are two things you should know here, which you may already know, or not. 

1.  She has a blog.  I read it.  It’s like a car crash.  I just can’t help myself!  She recently posted about wanting to break up with her current beau and an unnamed ex popping back up into her life in misery about his own current relationship.  He called her.  They drank together… Mr. W had drill two weekends ago in that neck of the woods………
2. The first time the animal attacked was the last time I took a walk through Mr. W’s cell phone.  It was over a year ago, and I found out about an earth-shattering heart-shattering small indiscretion on his part…involving “her” and a late night visit… I forgave him then, and I still forgive him. 

So those two thoughts in my head, combined with my own normal insecurity, combined with my new insecurities about all the stress I’ve brought into Mr. W’s life (kids, bad habits, health issues, etc, etc) gave the animal a dose of crack with a sugar chaser and it promptly bit my hand clean off.  Needless to say, in the name of honesty and openness, I waited a whole day and asked Mr. W about the found call this morning.  He explained.  It made 100% sense.  I’m nursing my (self-inflicted) wounds, and the animal is back sleeping cozily by the fire.  Or is it?

I think trust is one of those animals you can never quite be sure is tame.  Kind of like a wildebeest or a bobcat or a polar bear.  The slightest wrong move, wrong thought can send it off on a rampant killing spree, randomly mauling all the innocent (presumably) bystanders in its path.  A friend asked me if I have trust issues.  She asked if I trust Mr. W.  Without hesitation, my answer is yes.  But then why did I look in his phone?  I could say it’s because of that one incident, but then why did I look then?  Why do I read her blog?  Why do I think those thoughts?  Do I really not trust him?  But I do! 

I trust Mr. W with my life, my love, my children, my heart, my everything.  He is all of those things to me and so much  more.  Ok, so not my child, per se, but I have the same loving affection and caring for him as I do for my children so in a way, kind of.  When he gave me the explanation of the call, I believed him immediately.  Not an ounce of hesitation.  That’s trust, right?  When he told me about the first incident, I was hurt, crushed really, but I never questioned the end of the story.  (Well, maybe not out loud) He told me that’s what happened, and I believed him.  I believe him.  I trust him.  But then…why…?

Is it possible to trust completely?  Is it possible never, ever to doubt, to wonder, to question?  Can we as humans do it?  Can I?  Can you?

*The boy thought pancakes for dinner at IHOP was the greatest invention EVER!

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!