Hmmm…really? 

Thanks to a quick trip to phychcentral.com, I’m now totally obsessing about my apparent “issues.”  The handy little “do you have a problem” quizzes have determined that not only am I moderatly likely to have Adult ADD/ADHD, but I’m also likely to have moderate OCD.  Hmmm…that would explain a lot!

I’ve also been struggling with my age lately.  Not so much the actual number, as I realize I’m not really old, yet, but rather the feel of my age.  It’s bothering me more and more when I look in the mirror and see another bright white hair laying against my naturally dark hair, or waking up in the morning with the general ache in my bones and a desperate need for a shower and coffee before I can utter a coherant sentence.  The Lyme has taken it’s toll on me, but I’ve also not taken very good care of myself and it’s showing all day long (as well as all night with my goal of being in bed by 9:30 and waking up at least once to pee).  When did I turn into an old lady?!  Has my fire really fizzled out, already?

My 6 year old son, in all his wisdom this morning told me: Mom, you don’t have to be old.  Just exercise and take care of your body and you won’t be.  Nice, hon.  When did you get so smart?

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…

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. 

******************************************************************************************************************************************************** 

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!

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!

I have this horrible habit of over-studying.  Not so much with things I should be studying, like you know, school work and stuff.  But more the things that I know are going to make me totally crazy.  Like Lyme disease.  Since being diagnosed, I have inundated myself with facts, anecdotes, and stories of Lyme sufferers around the globe, looking for some sibilance of understanding about this thing I have inside me.  And now, since agreeing to go on IV antibiotics, I’ve been scouring the inter-web for stories, pictures, information about PICC lines and Groshong catheters and Portacaths, oh, my!  To the point that my head is spinning so fast that I literally feel a little dizzy from it all.  Why do I do this to myself?  Oh, yeah.  I’m a total freak! 

I was initially set on getting whatever put in my chest…more specifically in the upper part of my chest, a little below my clavicle.  Now, I just don’t know.  I’ve talked to a nurse.  A nurse manager actually at the place that will be providing my in-home infusion treatments/checking.  She gave me invaluable information about the whole thing, but I’m still confused.  There are pros and cons about both and I’m trying to think logically about the whole thing, but it’s so very foreign to me that I’m having a hard time being logical.  Besides that, I’m trying not to let vanity get the best of me, but in all honesty, it is.  There is the discomfort of tubes hanging out of my arm verses the idea of a permanent scar on my chest.  Even today, I’m wearing a top that would display that area for all the world to see…

I’m reaching out to everyone I know for help in deciding.  I don’t know if my indecision is just me, or if it has to do with the Lyme, or my unbalanced chi or what.  Two sessions ago, my acupuncturist actually posed the question to me of whether I was having trouble making decisions.  I couldn’t even decide how to answer her.  Hmmm…you think!  The trouble is I don’t really know anyone who can give me an opinion I would really trust.  That makes this all the more difficult.  I’m trying to reach my mom (an RN), well, honestly I’m trying to reach my stepfather, a medical nurse, for his opinion on it all.  He’s very well educated and quite frankly my mom isn’t the best for decision making either, especially when it comes to me.  It seems like all her medical training flies right out the window when she is dealing with someone she loves.  But I’m not sure if I totally trust my stepfather’s opinions either.  Some kind of residual I know better than my parents thing hanging on for dear life somewhere deep inside me.  So what to do? 

I know I don’t get many comments here, but really, I could use the help.  So if any of you stumbling across my blog have any experience with Lyme disease or even with PICC lines, Portacaths, groshong catheters, or any of the other random ports that they could conceivably put in my body in the next couple weeks, please, please, please leave me a comment, throw me some advice, even an anecdote of your experience.  It would be much appreciated!

I know it’s been awhile, but, yeah, life is sucking right now.  Well, not totally sucking, but stressful.  Totally stressful.  And a little bit of sucking.  Adding to the stress.  So overall…

First the good news:

The boy does not have Lyme Disease!!  Yea!!  But the bad news accompanying it: He does have an Iron deficiency.  Which would explain his extreme tiredness and general crankiness, all. the. time.  But that means he needs another blood test to see exactly what the deficiency is and how bad.  Yeah, suckiness.

Also on the good news front, we may be selling the house, like soon.  We got an official offer two days ago and are now hashing out the details of the deal.  Yea!  But the stress with it: we have to find a new house (to buy or rent) pack this house, and move by the end of November.  Yeah, suckiness.  The possible buyers are first-timers so they are hoping to get in on that $8000 tax thing that ends November 30th.  Yea!  Nothing like a rush to get your blood pumping!  Did I mention suckiness?

So, some good news, but a lot of stress.  Stress is great.  It’s wonderful.  It helps with sleep, and bodily healing, and relationships and everything! (I figure if I keep saying it maybe it will come true…)

And then there is the Lyme, which pretty much encompasses everything bad in my life.  Ever.  Seriously.

So, I’m not getting better.  This all started in July, and 3 months later I’m actually getting worse.  The pain, while not as severe (or maybe it is and my tolerance is just getting higher) is getting more widespread.  Like my entire body. The. Whole. Thing.  So there’s that.  But also, I’m getting new symptoms.  I think I mentioned my spinal tap, you know, when they removed my spinal fluid from my spine! Yeah, that was fun.  Anyway, it came back negative for MS, and also for brain damage.  Yea, right?  But wait, there’s more.  I’m having increased neurological symptoms. Memory lapses, poor short and long term memory.  Temper flares (severe).  Mood swings (also severe).  Difficulty (major) concentrating on anything. Speech problems.  Not actually speaking, but finding words..simple words.  Even typing this is difficult at the moment.  So no brain damage…yet.  Pain is part to blame for the mood swings and general brain fog too.  It’s very distracting to be in pain all. the. time.  I’ve heard that when you break something or experience some severe trauma that your brain shuts off the pain receptors to protect you.  That doesn’t seem to be the case for long term pain.  Long term, fluctuating, total body pain.  Yep, the pain receptors keep on functioning perfectly.  It’s hard.   On my body.  On my mind.  On my mood.  On my entire being.  But, yeah, that’s the rest of it.  Basically, the doc figures the little bastards that are causing the Lyme have found their way to my brain and while they haven’t damaged it yet, they may.  The spinal tap and MRI won’t show them since they are little bastards bacteria actually inside my brain, so without the damage there is no way of for sure knowing they are there.  But by symptom tracking (the best friend to any Lyme sufferer anywhere!) we are pretty sure they are in there.  So, agressive medicine time.

I’m getting an IV line put in.  I have basically two options here, both not appealing, both having a time frame of 1 to 3 months, or longer, depending on how I respond.

Option 1: a Picc line.

They put a line in my arm into my vein (or artery, whatever) and I self administer the antibiotics twice a day.

Option 2: a portcap.

They put a quarter sized cap thats about a half inch thick in my chest, either just below the clavicle, or possibly under my breast (for appearance sake only).  Then they stab the cap with a needle (the needle gets changed weekly) and leave it there for me to self-administer the antibiotics.

Both lines are run through my body to about the same area, going towards my heart.  The Picc line is cheaper, and won’t leave as big a scar, but it’s in my arm, which I tend to use more than my chest.  Also, I have these two 45lb people I routinely carry around with my arm, so yeah, there’s that.  The port is a more extensive “surgery” so I get to be put out (bonus) but of course that means more money for the anesthesiologist and all.  And besides, not a fan of those guys anyway.  There is a slightly greater chance of sepsis with the Picc line.  Sepsis is when an infection gets in your blood and you go on a nice date with Death, hopefully leading to nothing more than a good-night kiss, but with a good posibility of a love at first sight moment lasting for all eternity.  Yeah, that serious.  But the place the IV hooks to is much more secure, and smaller.

Besides the implant, I also will have a nurse.  Yep.  My very own home-visiting nurse.  She (or he) will come to the house to show me how to administer my antibiotics when I first get it.  Then she will visit once a week to change my dressing, check my lines and site, and if I get a port, change my needle.  This goes on,well, until it’s done.  Like I said, estimating 1 to 3 months for now, but who knows.  Yeah, complete and utter suckiness!

Mr. W isn’t doing well with all this.  He hasn’t for any of this really, but now it’s worse.  We are fighting, well, technically we aren’t even talking at the moment, but that’s from not wanting to fight.  I’m hurting and cranky and bitchy and hiding it all the best I can (apparently not the bitchy part) because I don’t feel like I can talk to him about it all.  It’s not just that he stresses, but I feel like somehow he’s making it about him.  And it’s not about him, dammit!  My mom does the same thing so I just learned not to tell her anything.  I don’t want it to be like that with him.  I’m so frustrated with it all.  I need a vent.  I need someone to spew to who will just listen and comfort me and not try to fix everything and not get visibly stressed everytime I bring it up.  I need to be held and babied a little.  I need someone to tell me everything is going to be alright, even if neither of us believe it.  I need to believe it, even if it’s just for that moment in time.  I’m scared.  I’m frustrated.  I’m depressed.  I’m in pain.  I’m not doing well at all and I have to fake the funk for work, for my kids, for my parents, well my mom at least, for the ex-men.  I’m tired.  Tired of the pain.  Tired of being sick.  Tired of being limited.  Tired of faking it.  Just tired of everything.  Yeah, not doing well at all.

So, that’s where I’m at today.  Tomorrow will be a new day.  Maybe better, maybe worse.  Maybe the same.  At least it’s one day closer to something else…although I don’t know what that something else is yet.  Just getting through today…

Yea!  In another unexpectped turn in my trip down Lyme disease lane, I got a spinal tap on Wednesday. 

I had my appointment (that I waited 2 months for) with my Neurologist.  He’s supposed to be super-smart, especially with the “weird stuff, ” with connections to Georgetown and a couple other big-time medical universities.  Of course, I couldn’t get over that he was a true doppelganger for Jeffery Tambor.  (this guy)

Or you might know him better as this guy:

(His other film credits include the cigar-smoking nemesis in Hellboy, and Anthony Hopkins’s son-in-law in Meet Joe Black, as well as a slew of cartoon voices.  He provided the voice for King Neptune in The Spongebob Squarepants Movie.  How cool is he?!)

So, yeah, Mayor Augustus Maywho (or King Neptune if you prefer) is my Neurologist.  A little unnerving, but in a way, not.  It’s all very strange! 

Anyway, the Mayor goes over my Lyme and medical history which brought me to him as well as my MRI (brain only).  He then gives me a “neurological test” which consists of me remembering “Big dog, Red ball, Clear sky,” in that order, touching my fingertips and nose, and a mild strength test.  I passed.  Whew!  He said my brain looked good (“like the brain of a 20 year old” were the exact words) BUT he needed a MRI of my upper spine (neck area) as well.  Well that sucks!  Sucks more money to be exact. 

Then the bomb:

Becausemy pain has been concentrated on one side, AND because it is consistentlyin BOTH my arm and my leg, there is a chance the little Lyme-disease-causing-asshole-bacteria are in my central nervous system, meaning that the doxy that I’m on is actually not helping.  I guess oral antibiotics can’t get to the central nervous system.  Anybody guess what can?  Intravenous Antibiotics.  Yep, IV treatments.  For two months. Or longer.  Fun, fun, freaking fun!  In case you are curious, IV antibiotics basically means that you have a stint put somewhere in your body, usually the chest area, and you go into the doctors office how ever often to get your treatments.  The stint stays in until the treatments are complete.  Of course, there is risk of infection (or in my case with my insane ever curious children, injury) at the site of the stint.  And it just sucks.  Look at me, all sexy like with my stint in my chest.  Yeah, sorry ahead of time just in case, Mr. W. 

But back to Mayor Maywho.  Basically, I could get the treatments on the hunch, BUT “good medicine” dictates that we prove that this is the case.  What does that mean?  Spinal Tap! Dun, dun, dun.  The Mayor assured me it was just like an epidural.  Great.  I HATED THE EPIDURAL!! The only reason I lived, or, more to the point, the anesthesiologist lived that day was because I was 5 cm dilated and on a double dose of pitocin and 9 months pregnant with loose joints and couldn’t run that fast!  Hated it!  The Mayor went through the procedure: 20 minutes, in office, easy-peasy.  He also suggested that we could check for anything else that may be lurking in there, like MS, just to be sure.  So I said ok.  And he said “how about Wednesday afternoon?”  Seriously?  Two days to prepare for this?  *Sigh*  Ok, fine, Wednesday. 

So Wednesday comes, and Mr. W and I play hookey from work (he was going with me anyway).  But really, what the hell good would I be to anyone with my mind on the giant needle that would be entering my spinal column in mere hours? 

And a spinal tap goes like this:

First, the doc (Mayor Maywho) goes over the procedure, again, adding possible side-effects and dangers (Ok, glad you didn’t tell me that before) which include headaches, pain at the site, and the ever possible infection.  Plus there is the slight chance that the spinal fluid won’t stop leaking out of the little hole.  Nice!  The cure for which is an anesthesiologist going back in there (yea.) and putting some of your own blood over the puncture to create a clot/homemade band-aid.  Ok, no questions?  Here we go!  First I had to curl up in a ball on my left side, facing the wall, pulling my knees so far up on to my chest that I’ve been spitting out kneecap ever since.  Then, he (the Mayor) adjusted me to align my spine, making it all the more uncomfortable.  He tucked in some drapes (unnerving) and began to swab with iodine.  And then the fun starts.  First is a shot of local anesthetic: bee sting then burning, searing, flesh melting pain.  Done.  A minute later, another local anesthetic, only deeper into my back: more burning, searing, flesh melting pain.  Done.  Then about a million (actually probably 2) minutes later, he starts poking around.  Why?  I HAVE NO IDEA.  But he’s poking, poking, telling Mr. W some anecdote, poking and then he announces, “ok let’s start” in way to cheerful a voice and all I’m thinking is I totally felt all that poking. No, wait, can’t we wait for the anesthetic to kick in, like for a week or so?  NO WAIT!  I’M NOT– and there’s the tap.  It’s not painful per se, more like a completely foreign and totally unnerving pressure inside your body that you just know you shouldn’t be feeling in a place you shouldn’t be feeling it.  It just felt, wrong.  Anyway, it’s in.  I’m breathing.  My eyes are scrunched as tight as possible.  I’m trying to block out where I am and what I’m doing.  Trying to go to a place filled with flowers and butterflies and no freaking Whoville Mayors!  And Mr. W announces, “Hey, that’s cool!  It’s clear!”  Ok, thanks for that, babe.  Trying not to think about my spinal fluid seeping out of my body, you know, where it’s not supposed to me, by way of long tube, in my spine that isn’t supposed to be there.  But thanks for the update, now SHUT THE HELL UP!  Oh, and I love you. 

I guess Mayor Maywho checked my pressure? with some giant tube thing and then let my spinal fluid drip into 4 waiting test-tubes for about 15 minutes.  And then he pulled it out and we were done.  I was allowed/told to roll over on my back, stretch out and lay there for an hour “to allow your body to replenish the spinal fluid that was collected.”  You know why this is important?  It relates to the headache side-effect.  BECAUSE YOUR BRAIN FLOATS IN THIS SAME FLUID!  And without the right amount, it just kind of bumps into things causing brain-bumping headaches.  Yeah.  Sounds fun, right?  So after the hour, I get up all slow and gingerly, waiting for the pain….but there’s none.  whew!  But then I spent the rest of the day waiting for the pain which coincidentally gave me a stress headache, so, yeah. 

*on a cool note, I got to walk around from Mayor Maywho’s office, to Labcorps** to the local hospital, to the local emergency room carrying my spinal fluid.  I kept showing Mr. W and any passers by my little baggie of my spinal fluid receiving beaming appreciation for my utlra-coolness…or possibly “you are a total freak” looks.  Either way.  I felt cool.

**Labcorps totally sucks, by the way.  I got to the local office and the girl behind the counter greets me by saying she can’t draw the ordered blood to accompany my spinal fluid because it says in her special, all-knowing Labcorps Bible manual that the spinal fluid and the blood shall be taken simultaneously.  This woman actually looked me in the face and told me, mere minutes (an hour) after my spinal tap, clutching proudly to my spinal fluid, that I was going to have to do the whole thing again, AND have blood drawn at the same time!  I don’t think that’s even possible!  So Labcorps people totally go on my list of people whose lives were saved by extenuating circumstances in my life, right under anesthesiologists.

So it’s been two whole months since that mystery pain crept in and turned my world on end, later becoming a diagnosis of Lyme disease, continuing into a whole habit-changing, pill-popping, symptom-tracking, I-hate-my-body-ing thing.  At this point, I’m so over the multiple daily inquiries on “how I’m feeling today” by all those around me, mostly because they don’t actually give a shitand are only asking out of some morbid fascination with other people’s pain combined with a lame attempt at being sympathetic, or interested in my life, or whatever.  Basically I’ve been putting on a happy face for everyone just so they will leave me the hell alone, and also stop looking at me like “ooh, there goes the sick girl.  She’s sick.  It’s a whole sicky thing over there.  It must suck to be sick.”  BLAH-BLAH-freaking-BLAH!

But really, how am I feeling?  Well…

The pain is lingering, but not constant.  I’m to the point where I can feel it creeping in and pop a pill before it becomes wince-worthy.  I’m not sleeping, like, AT ALL, so yeah, that sucks, but it’s not the first time in my life I’ve had an all out war with insomnia.  For some reason I wake up every morning dying of thirst.  Like seriously, DYING!  So thirsty that my morning coffee that I love OH SO MUCH just won’t go down because all I want is 15 gallons of water.  And as if that isn’t enough, my coffee affair is further sabotaged by nearly constant nausea.  It is so difficult to enjoy a nice hot cup of coffee with creamer when you feel like you are going to throw up any second.  And even harder when you actually do!  Work sucks all the way around for the lack of sleep, the annoyance of waking up at 5am (on no sleep), the uncomfortable semi-professional attire (when I would love nothing more than to slip into some nice comfy sweats and go back to sleep), the lack of coffee to counteract the lack of sleep and the getting up at 5am, and, yeah, the urge to suddenly up and chuck doesn’t mesh well with my  job description which calls for constant attention to my position for at least an hour at a time.  There are hot and cold flashes, headaches, both tension and sinus, did I mention the undying thirst? And of course the accompanying need to pee every. twenty. seconds.  And there are all the other little things: the brain fog, the sore back and joints, the “sensitive” stomach, the stiff neck, the lack of any kind of energy whatsoever, the occasional light depression…the list just goes on! 

But I’m keeping a happy face…trying…

With the weather turning I am now faced with the decision on whether or not to get not one, but two flu shots (you k now that H1N1 thing).  I haven’t had one in years.  Not since I separated from the military and thusly separated from the MANDITORY stamp put on every vaccine that came out.  (Anthrax, yellow fever, flu shots.  check, check, check.)  But now, I just don’t know.  Do I chance getting sick in my weakened immune state?  Or do I get the shot and chance getting something from the “weakened” virus in my weakened immune state?  And what about the kids?  Neither of them have gotten in for testing yet (for Lyme) which even if they did there is the great possibility it will come back negative even if they have it (yet another joy of being a Lymie).  My docs office is so backed up that I can’t get them in until next month and the girl’s father is just being, well, difficult about the whole thing.  What to do, what to do?  Taking sick leave for the flu, whether for myself or for the kids, just isn’t an option right now.  And I don’t think I have the physical strength to deal with getting the flu on top of everything else I’m feeling right now.  Arrgghh! 

And next Monday: the neurologist.  Do I have holes in my brain?  Do I have MS?  Am I going to go blind?  Have the little buggers that are causing the Lyme gotten in there?  Am I going to lose my mind (or have I already?)?  Or is everything perfectly normal?  (That last one was for Mr. W.  Love you, baby!) 

And now I think it may be time to vomit, get a gallon or so of water, take a couple dozen pills, and put on a happy face to resume work.  Cheers!