Category Archives: Lupus

Our Top 12 Vacation Fails

Disclaimer:  Our vacation for the most part was incredibly relaxing and rejuvenating.  In fact it was deemed the “best vacation ever” by all 4 kids within a few hours of arriving. That is great for me, but boring for you.  So you just get to hear about the non-Rockwell moments.

Since I was sick before our vacation, I did very little nothing to prepare for our trip.  I told everyone they were responsible for packing for themselves.  Jim made sure all the bags were ready to go and loaded all the luggage in the car.

Except his.  He had 2 shirts and 2 pairs of shorts for the entire week.

But we wanna' be with you guys.

We folded down the back row of seats in our suburban for the dogs to ride.  Except for a cooler, they had the entire back area of the car.

They instantly jumped the cooler to cram themselves on top of the suitcases.  And Greg.

“We just wanna’ be wif you guys.”

#3 – SWEET OR SOUR I’ve always been a mosquito magnet and couldn’t step out of the wooded lake house without the little buggers instantly finding me.

Me: “I must be really sweet. The mosquitos just won’t leave me alone!”

Greg: “That’s why I love you Mom…”

Me: <<Smiling – thinking he’s agreeing that I’m SOOO sweet>>

Greg: “…Because you keep them away from ME.”

This is what the nuclear power plant looks like.
This is what the nuclear power plant looks like.

We made the mistake of telling the boys that the water temperature was 91 degrees because the lake was built to cool a nuclear power plant.

They were convinced we were swimming in toxic waste.

Boating toward the nuclear power plant
All Greg heard was nuclear.

#5 – DEEP DISH FISHING Despite many fishing attempts during the week, nothing was caught.  On the last day, Jim stuck a leftover pepperoni on his hook on a whim.  He instantly caught a fish.

The fish must have heard that someone ordered a pizza with anchovies.

Jake is a hat guy but forgot to bring any on the trip.  He searched for a “souvenir hat,” but we couldn’t find any tourist-y shops.  He finally found a baseball hat with a pirate skull at a little country store.  Since it was the ONLY hat around, I said yes without really looking at it.

Later I noticed there were words under the pirate skull.

“Surrender the booty.”

Aaaaargh, not the best choice for a 14 year old.

#7 – GAME OVER During a game of Battleship, Greg called an incorrect guess by Jim a “close miss.”  Of course, Jim’s next guess was a hit.  He tried to explain to Greg that by calling it a close miss, that was a clue that the ship was probably next to that spot.

Greg replied,

Loose lips sink ships must be about this game.”

We rented a boat for the week.  The agreement stated “no water sports” which we interpreted as “we have to say that because we don’t want you to sue us if you get hurt.”  So we attached a tube to the boat anyway.  The marina called Jim’s cell while we were in the midst of tubing to tell us they could see us.  Oopsie.

We tied the tube to the kayak.
Motor boat, kayak. To-may-to, to-mah-to.

Note to self:  When breaking boating rules, don’t ride back and forth RIGHT IN FRONT OF THE MARINA that RENTED YOU THE BOAT!

Since the marina threatened to take the boat away for violating the rental terms, we followed the rules…until the last day.  You are going  to confiscate the boat now?  Thanks!  Now we don’t have to return it in an hour.

In the mean time we improvised and invented “kayak tubing.”

I’m terrified of water.  Not as much the water necessarily as what I can’t see IN the water.

Why do they have to call them “bodies” of water anyway??  And I know sharks are only in salt water, but I’m sure there is SOMETHING in that lake just as scary.  Like a mutant toxic waste fish-snake-lizard.

The boys kept asking me to go tubing (before we got busted) and, not wanting to look like a pathetic chicken in front of them, I hesitantly agreed.  The tube had already taken quite a few trips behind the boat.

Tubing fun

I jumped in and instantly thought it felt too squishy.  Everyone poo-poo’d my concerns as paranoia.

Again, not wanting to be a chicken, I decided to go with the flow.  The boat started moving and the front of the tube instantly went under and the entire thing filled with water.

My worst fear!  I was sinking!!  By the time they pulled me back to the boat, the tube was completely submerged and almost completely out of air.  And everyone was laughing hysterically.  At my hysterics.

I wasn’t amused.  Jim will damn well make sure the thingies where the tube is inflated (what are they called anyway??) are tightly plugged next time.

After my titanic experience, I was definitely scarier than any mutant sea creature.

Speaking of titanic...
Speaking of titanic…

One night we boated to a restaurant for dinner.  On the way back, the engine overheated.  We spent the next two hours waiting for the engine to cool, and then moving full speed for about 30 seconds before it would overheat again.  Did I mention that the lake is 17 miles long?  And that of the 4 cell phones we had on the boat, 3 had dead batteries?

The lower the sun went, the higher the stress level went.  I tend to inappropriately joke when I’m stressed.  So even though I was envisioning spending the night on a pitch dark lake surrounded by the Loch Ness monster, I made up songs.  The skipper and Gilligan would have been proud.

“The Dad was a mighty boating man.  The mother brave and sure.  Six passengers went to dinner that day.  For a three course meal.  A three course meal.

The engine started turning off.  The tiny ship was stuck…”

The favorite was to the tune of 70s song “We need the funk. Gotta have that funk. Ow.”  Click on the link to listen so you can visualize us on the boat singing…

“We broke the boat.  Gotta fix that boat. Ow.”

We didn’t really venture further than that for those lyrics.  Everyone just joined in right away and sang that same line over and over.  And over.  I never need to hear that song again.

When the engine would get too hot and cut off, the boat couldn’t be steered and would just drift.  As we approached a bridge, Jim was trying to time it to make sure the engine didn’t overheat too close to the bridge so we wouldn’t drift into the bridge supports.  It was at that moment that I realized just how much Eric is like me.  He broke into song to the tune of “I love it” by Icona Pop (again, feel free to click on the link so you can sing along)…

“I got this feeling on a summer day when we’re afloat.  I crashed my boat into a bridge.  I watched, I let it sink.  I threw the engine into a bag and pushed it in the lake.  I crashed my boat into the bridge.  I don’t care, I love it.  I don’t care.”

That’s my boy.Paddling the broken boat

We finally got someone to answer the phone at the marina as the sun was setting behind the trees and the response was “You really need to get the boat off the lake.  It’s almost dark.”  Gee thanks.  I wish we’d thought of that two hours ago. Then we were given the option of calling a $350 tow boat.

Jimmy pulled out the paddles instead.

Lupus and the sun don’t mix.  We rented a boat with a canopy so I could stay in the shade.  Unfortunately, when we were stuck on the lake on the broken down boat, the sun was too low and there was no shade.

Lupus and stress also don’t mix. Apparently when you put the three together, it’s no bueno.  As the sun crept below the canopy, whatever area of my skin the beams would reach almost instantly broke out in a burning rash.

It was very bizarre.  I could actually watch my skin turn red and splotchy within 10 seconds of the sun hitting it.

But I tried to keep singing anyway.  (It ended up lasting for weeks.  The burn/rash, not the singing.)

The lake is in a town called Bumpass.  Four boys in a town by that name…the jokes are endless. End. Less.

Vacation win though?  When your kids are misbehaving, it is perfectly acceptable to say

“You are being a pain in the Bumpass.”

P.S. Don’t leave yet.  At the bottom of the photos is a vacation video you don’t want to miss.  It’s pee your pants funny.  Trust me, I found that out the hard way. 😉


Cute photo, huh?

Group boat shot

I had 247 rejects such as this before I got them all to smile at once.

Group boat shot goofy

Restaurant texting

Restaurant Greg

Little piece of paradise
I ended up with 12 fails but, yeah, you get the picture (pun intended).

Sorry, I don’t think I can post videos here so you have to go view it on my FB page.  It’s really worth the extra click though!  Click here —> VIDEO OF THE SPINNING CONTEST.

A letter to my kids: My Roller Coaster Life

Dear kids,

You know I’m sick, but we don’t really talk about it.  I never want to worry you by telling you all the problems Lyme Disease and Lupus have caused me.  But by NOT telling you, I’m probably worrying you more.  So, let’s talk.

I’m sure it’s confusing for you.  Adults don’t even understand the ups and downs, so I don’t expect you to.  But I can try to explain a bit in terms you will relate to.

Ups and downs is the perfect way to describe it.  Like being on a roller coaster.  A never ending roller coaster.  Yeah, I know you are thinking “how cool would THAT be?!?”  But wait.  There’s more.  When you get on the ride and the harness clicks in, it is too tight.  Way too tight.  It hurts.  Reallllly hurts.  You wave frantically and yell at the operator but he just smiles an evil smile and pushes the GO button.

As the ride takes off, you try desperately to stop its grip on you.  You squirm, you pull, you hit it.  But nothing helps.

As you start to head up the first hill, the harness gradually loosens and by the time you reach the crest, it is finally comfortable.  You think you can now relax and enjoy the ride.  You get that moment where you are perched at the top of the hill.  It is exhilarating and exciting.  Time seems to stand still.

Then you start to plummet down the hill.  You feel the harness begin to tighten again.  It squeezes every inch of your body until you want to scream.  It takes your breath away.  Your head feels like it is spinning.

Just when you think you can’t handle any more, you begin another ascent.  The harness begins to loosen again.  Relief.  Ahhhhh.  But this time you can’t enjoy it as much.  What goes up must come down.  And you now know that the coming down is excruciatingly painful.

This time when you reach the summit, you try to just focus on the joy of that moment.  But you can’t because the dread of the descent weighs heavily on your mind.

Each plunge breaks your spirit more and more but after enough hills and valleys, you finally learn to get the most out of that time when the harness isn’t squeezing.  You enjoy that part of the ride and look forward to the peak.  Even though you know the ride can’t end at the top of a hill.

Then – just when you think you have a handle on the ups and downs – out of nowhere you get slammed with a loop-de-loop (or maybe I should call it a lupus-de-lup) which brings a whole new set of problems.

And just as the ride should be coming to an end, the operator smiles his evil grin again and it all starts over.

Add a blindfold so you can’t see the twists and turns coming and that, my dears, is Mommy’s life.

Not being able to get off of this ride makes me sad.  Sad about all of the things I have missed out on with you guys.  Like the many nights I missed tucking you in because I fell asleep on the couch before your bedtime.  Or the days you had to wear mismatched socks because I hadn’t done laundry.  (But 2 different socks seems to be all the rage now.  You’re welcome fashion world.) 

But before I make YOU sad, let me add that there is actually some GOOD that has come out of me being ill.

I don’t have enough energy to be a helicopter Mom so since I don’t hover, you have taken off and soared.  You are growing up to be incredibly mature, independent young men!

You all know how to do your own laundry.  You don’t.  But you know how.

You all know how to use the oven, toaster, microwave and blender.  Greg, you have been able to fix your own lunch since you were 3.  Eric, you can take an almost rotten banana and turn it into an awesome loaf of bread.  Jake, you are now our pancake specialist (and you even got me published in a book.  Not for your culinary skills perhaps, but you’ve made many people laugh about what happens If You Give A Kid A Bag Of Pancake Mix.).  Jimmy, you make to-die-for peanut butter brownies.  No, seriously.  Sometimes I’m afraid you’ll kill your brothers if they eat more than their share.

Although I’m sure it drives your teachers insane that I am too foggy brained half the time to make sure you get your homework completed, you are slowly learning to be responsible for getting it done on your own.  As long as you manage to get enough homework turned in to actually GRADUATE, you are going to be kick ass butt college students.  All those kids who depend on their parents to stand over their shoulder to study will be struggling not to flunk out, but not you guys.  You guys will be cranking out solid Cs.

You all have compassion.  You may fight like cats and dogs most of the time, but when I REALLY need you to co-exist peacefully so I can rest you always seem to have my back.  (Well, since our cats and dogs get along, I will say you fight like praying mantises – manti? – and stink bugs.  I won’t say which ones of you are the stink bugs.)

AND *I* have had to learn not to sweat the small stuff, which is a very good thing.  I need all my energy for the big stuff, like making sure I take a shower at least once a week.

I’ve realized that the world won’t stop spinning because I didn’t get the sheets changed on your bed this week (or last, or the week before, or…ummm…you get the picture).  Plus, I can tell you “good night, don’t let the bed bugs bite” with meaning.  Psssh, no.  Of course there aren’t really bugs in your bed.

(As far as I know.)

I’ve learned to appreciate the days I DO feel healthy.  Not many kids get to see their Moms get downright GIDDY over feeling like a “normal” person for a day/week/month/however long it lasts.  You have to deal with the lowest of the lows, but you also get to see pure joy at the highest of the highs.  The times you get to see a glimpse of how I want to be all the time.  The times on the roller coaster when my hands are up in the air and I’m shouting “bring it on world.”

Unfortunately, it’s been a while since you’ve seen my hands up in the air.  Lately I’ve been hanging on for dear life while the coaster has been barreling down. It’s been a rough month summer year for my health.  The squeezing of the harness is definitely taking a toll on my body.

But don’t despair.  There has to be another ascent soon.  There just has to.

Then I will be back to my uphill battle.  And, in this case, an uphill battle is a good thing.

When life gives you lyme, make…?

I’ve been in a real funk this month.  There’s a good reason funk starts with f u.

This post will probably put you in a funk too.  It is long.  And whiny.  And depressing.  You’ve been warned.  OK, I’ll add a touch of funny.

May is ironically awareness month for both Lyme and Lupus.  The two illnesses I have.  (If you know me, you know I don’t like to call it disease. Sounds too permanent).  During the month there are extra articles on the internet, extra emails in my inbox and lime green and purple ribbons which all force me to think about the blasted sicknesses way too much.  Sometimes I want to shout “I am already well aware.  I don’t need a special month to remind me!”  I know, I know.  The purpose is to educate others, which is a very good thing.  But it still makes me grumpy.

This year has put me in the funkiest funk because it was almost exactly 10 years ago that I started my journey to try to figure out what was wrong with me.  TEN YEARS.  A decade.

And I was sick long before that but 10 years ago was when I reached the point that I KNEW something was wrong and I KNEW I had to figure out what it was.

I’ve always been susceptible to infections.  I was a regular strep throat patient during my childhood, with an occasional ear or sinus infection thrown in for good measure.  Once I grew up, my strep did also.  The more responsibility (i.e. stress) I had, the worse my infections got.

First job after college…out sick 3 days my first week.

Just married…Jim at a couples resort alone while I got multiple antibiotic shots in the tushy from a scary Jamaican doctor.  At least I think they were antibiotic shots…(that story could be a blog post of its own.)

Over the top birthday party planned…strep plus a ruptured ear drum.

Baby Jake in the hospital overnight for a breathing treatment gone wrong (could be another blog post)…me in the hospital the next week with a tonsilar abscess.

These examples continued to get more and more frequent until the slightest little stress would require about a month of multiple antibiotics before I was better.  I literally was sick more than I was not (yes, I DO mean literally).  But once I finally kicked it, I felt great.  Only until I got sick again, but those weeks of health in between were dang good.

I finally had a tonsillectomy 12 years ago because I think the doctors got tired of saying to me, “worst case of strep I’ve seen” almost every single month.  But I shocked them all shortly after surgery by getting a tonsilar abscess, without tonsils.  Medical mystery is not a fun term to hear when you are ill.

The surgery did help though because I was getting strep less than half as much.  So I was on antibiotics much less often as well.  That will be important down the road.

While I was technically sick less, I started feeling less healthy between bouts.  Weird symptoms were cropping up but I’d brush them off as “nothing” and then before too long, I’d end up with strep and the weird symptoms would go away.  For a while.

Fast forward to the next year when I was pregnant with Eric.  The one time – well, 4 times I guess – in my life I have never had strep is during pregnancy(ies).  The hormones must jump start my immune system or something. After Jimmy and Jake’s delivery, the immune battery died and the strep monster returned.  After Eric was born it was different though.  I went months without strep.  Over a year without antibiotics during and after his birth.

The weird symptoms returned.  With a vengeance.  I won’t list them all, but I did come up with “pet names” for some symptoms.  SFTD.  No, not STD.  Stupid Fat Tongue Disorder caused me to forget words, say the wrong word, say the right words in the wrong order and/or slur whatever words made it out of my mouth.  It was aslway a toin coss to trip to guess what shlwould come ouf ot my…ummmm…what is the brplace with lips…ummm…eyes?…making sense no.   I outwardly joked because some of the things I said really were as ridiculous as that last sentence, but inside I was very worried about what was happening to me.  I reached a point before diagnosis that I avoided conversations if at all possible because it was just too humiliating when SFTD would unpredictably come and go.

Many memories of that time are fuzzy, but I clearly remember one day in May ten years ago.  Eric was 6 months old, Jake was in preschool and Jimmy was in 1st grade.  Getting Jimmy and Jake ready and dropped off at school was all it took for me to “hit the wall.”  That was my name for the immense and sudden fatigue.  I seemed to slam into the wall extra hard that day.  My only saving grace was the morning nap.  I plopped on the couch to recharge until preschool pickup time.

Eric had different plans.  He decided he didn’t like his morning nap anymore.  As soon as I plopped, the baby monitor lit up.  He was crying.  Then I was crying.  I was so tired and felt so sick, I could not move off the couch.  He cried harder.  I cried harder.  I physically couldn’t go get my baby out of his crib.  I finally did.  Somehow.  And I limped through the rest of the day.  Somehow.

That was the day I finally realized something was really wrong and I needed to figure out what.  What I didn’t know at the time was that I would have 3 1/2 more years of not only hitting walls of fatigue, but also walls of ignorance and insolence while trying to get doctors to listen to me.

When a 30something year old asks why she has heart palpitations, she is ridiculed.

When a Mom of a 6 month old asks why she is horribly fatigued and foggy, she is told she has PPD.

When a Mom of 3 tries to explain that her cognitive function is severely impaired, she is flippantly told it is Mom brain.

When a Mom of school age children complains of swollen lymph nodes, unexplained fevers, chills and body aches, she is told that it’s just kids bringing home germs from school.

When a woman has night sweats, she is told she may be going through early menopause.  Even though she is in her 30s.

When a patient is dizzy, she is told to take iron supplements even though she isn’t anemic.

When a patient complains of numbness and weakness, she is told it is all in her head.

When a patient reports a variety of symptoms that come and go, she is called a hypochondriac.

Not wanting to make waves, I took the borderline mockery from some of the doctors and continued to suffer in silence.  I still was knocked out by the occasional strep, after which I would temporarily feel well. At the end of the year I found out I was pregnant with Greg and, once again, the symptoms were mysteriously relieved.

However, as soon as Greg was born my body went into a tizzy.  In the hospital I felt very ill and alternated between sweats and chills.  I was so out of it.  To this day I am shocked no one noticed the state I was in.  But somehow they didn’t.  I guess I really AM good at hiding symptoms.

When I was discharged, my brain was short circuiting.  I would go through periods where I couldn’t remember anything.  I’m talking ANYTHING.  I forgot Greg’s name.  Several times.  Can you imagine the horror of saying to yourself, “What is my brand new baby’s name???? Wait, I remember it starts with a G.  G…Ga…Ge…Gi… Crap.”  Soon my brain went back to its normal level of forgetfulness where I at least knew family member names.

During the next year, my Mom had a stroke and then surgery for lung cancer.  I spent many, many days driving out to visit and care for her.  *I should add here that I misspoke when I said pregnancy is the only time I don’t get sick.  I also don’t get sick DURING a stressful crisis.  I guess like the hormones during pregnancy, adrenaline kicks in during crisis.  After stress=sick as a dog.  During stress=healthy as a horse.*  Somehow I hung in there until the day Mom went for her post-surgical checkup and got the green light that she could resume normal activities.

My body heard that my help was no longer required and it crashed.  And burned.  And smoldered.  It wasn’t my normal post-stress case of strep.  As bad as my strep could get, this was much, much worse.  I called my ENT and told him I felt like I had meningitis.  After he chuckled,  he informed me he was sure it wasn’t meningitis.  Crazy as it sounded, I was convinced I had meningitis and told him so.  All he heard was “crazy.”  I was so ill I don’t remember much of the next two weeks, but I do remember at one point thinking “this is it.  I’m going to die.” Finally, my buddy Strep made his appearance.  They put me on a super-duper antibiotic and my discredited meningitis also went away.

I needed to make more than waves.  I needed a full blown tsunami.  I started pushing doctors for answers.  And “medical mystery” wasn’t going to cut it.  After lots of puzzled looks, head scratching and referrals to doctor after doctor, an infectious disease doctor tested me for lyme.  It came back positive.  And I had probably had it for an extremely long time.

Remember I told you the decrease in strep frequency would eventually come in to play.  Well, it finally has.  By periodically taking antibiotics for strep, I was unknowingly keeping the lyme bacteria under control.  Since the medicine wasn’t strong enough to eradicate it, it was always there.  Hiding.  Waiting.  Plotting my downfall.  OK, maybe that’s a little dramatic.  But the bacteria would get stronger and the symptoms would get more prominent each time I was off antibiotics for an extended period or endured a stressful situation.

Lyme has different stages, each one progressively worse and harder to treat.  Most likely I went up a stage (or got knocked down a notch heath-wise) after Eric was born and then moved to the late stage after Greg was born.  The stress of my Mom being ill gave the lyme enough ammo for an all out attack.  And the crazy theory of meningitis?  It WAS meningitis.  Lyme meningitis.  Chuckle THIS, doc.

I’d love to wave the test results in front of each and every doctor who dismissed me.  And see if any would apologize for treating me like an idiot.  Maybe if they had listened to me sooner, I wouldn’t have reached the worst stage of lyme.  The stage where I can and DID get meningitis.  The stage that is hard to get rid of.

The stage I’m still fighting 10 years later.

Ten years that feel like they have aged me at least 20.  A decade where I’ve decayed.

When life gives you lyme, what should you make?  Make…the doctors listen to you.  Really listen.

And then…Diet Coke with Lime

You put the lyme in the Coke you nut and drink them both together.

You put the lyme in the Coke you nut and then you feel better.

I’ve always suspected Diet Coke has a medicinal purpose.  If it can eat rust off metal it should be able to handle a little tick bacteria, right?

Hmmm, I guess I just inadvertently participated in Lyme Awareness month. I should probably include some information that is actually useful.  So here goes…

Ticks suck ass!  In more ways than one.  Really, they can get anywhere.  So check your tush for ticks. 

Ticks are the pits.  And they like sweaty pits, so check there too. 

Ticks make you have a 365 day period every year.  No, not really.  But they are the size of the period at the end of this sentence.


Possible future rants…

  1. Sometimes the elixir doth break her, not fix her.
  2. Mourning the old me.  Well, the young me.  Actually, the pre-sick me.
  3. How Lyme did and did not give me Lupus.

Topics for another post?  Perhaps.  First I will wait and see how many followers this one loses me.  😉

The funny will be right back after this commercial break.

It WAS My Party, and I’ll Cry If I Want To

I should be greeting my guests right now for our annual Chili Cook-off party.  I should be showing them where to put their coats.  I should be showing the contest participants where to put their entries.  I should be smelling the spices from the various recipes.  I should be handing out tickets for voting.  I should be all smiles.

I shouldn’t be stuck in bed with lymph nodes so swollen I can’t turn my head.  I shouldn’t be feeling my throat get worse and worse with each swallow.  I shouldn’t feel like I’m in quick sand when I try to move.  My husband shouldn’t have spent all day trying to get in touch with everyone on the guest list to tell them the party is cancelled.  I shouldn’t be in tears.

My illness(es(es…)) have had royally sucky timing lately.  Suck.  E.  With a capital E.

We hosted our first Chili Cook-off 18 years ago.  I love hosting parties.  My body doesn’t.  I almost always get sick shortly after hosting anything.  We refer to it as my “PPSS.”  Post Party Stress Syndrome.  I know it isn’t a coincidence that I ended up being sick enough to send me to the ER the past two Februaries (the Chili party is always the end of January).

But apparently my body has decided it isn’t going to wait until AFTER big events anymore.  It has now chosen twice to shut down DURING.  And ruin things.

I always tell people the treatments I’ve tried during the past 5 years have improved my symptoms.  Malaria medicine that looks – and tastes – like fluorescent paint.  Antibiotics.  Handfuls of supplements.  More antibiotics.  Not to mention the multitude of tests I have endured to try to make some sense out of some of the bizarre symptoms.  And I do know that I am better.  But I sometimes wonder if the medicine has helped as much as I think, or if I have just adjusted my lifestyle to accommodate.  lyme social life

I evaluate the effort required for everything I do to decide if it is worth using my limited energy.

I now know I must schedule in a nap (at least once) daily.  My kids are now older and more self-sufficient, and therefore less physically taxing.  I have lowered my standards of what a “clean house” means.  I have raised the acceptable level of “video game time” so I can rest.  We eat out much more than we used to.  My kids don’t have friends over as often as they’d like.  I have given up hobbies.  I have given up a lot.

And now apparently it is trying to make me give up my parties.

So, am I really winning against the disease?  Or is it winning against me?

Every day I have to live within the constraints that my body sets for me.  And when I don’t, I pay the price.

Some days the price is higher than others.  Like today.

But tomorrow is another day.  Another day with a 10 pound pot of chili lookin’ for a party.

(In case you haven’t read My Sick and Tired List, click here.)


I will probably delete the rest of this but feel the need to vent.  And no one reads blogs on the weekends anyway so it is a good opportunity to get my frustrations out…

To the lady woman who commented “Boo.  Another A-list wannabe.  Puke!” on my post about my lunch with Melissa:

Screw.  You.

My trip was a much needed break from the daily struggles of my “L-list” life (lyme and lupus life).  And if you had actually bothered to read the rest of my posts about the trip, you’d know that even going to another state wasn’t enough to escape the problems.  They followed me there too.

But it was still a very exciting experience that I wanted to share.

And I’ll take my sick life any day over a life so bitter that you can’t stand to read about a little happiness in someone else’s life without being snarky.

…And I must point out that you made that comment while posting on the Real Housewives FAN Page…

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My Sick and Tired List

I am sick. A lot. I hide it. Well.

I try not to complain. I really do try. I tell myself that others have worse problems. I’m fortunate in many ways. But that doesn’t mean my problems aren’t important. So, for today, I’m giving myself permission to complain. A lot. I’m not hiding it. Not well.

I have a body full of bacteria and a weak immune system. I have lyme, and have also tested positive for all of the major co-infections that ticks carry. Lucky me got bitten by a tick with super powers. Oh, did I mention I also have lupus? And blood clotting issues that makes my blood the ideal environment for bacteria to thrive? When I get sick, I really do it right.

A recent illness required a trip to the ER. While lying around, I made a sick and tired list. It was therapeutic.

  • I’m sick and tired of hearing “but you don’t look sick.”
  • I want to not FEEL sick.
  • I’m sick and tired of feeling weak for not being able to get rid of  problems caused by a bite by something the size of a pin head.
  • I want to feel strong for being able to get out of bed at all while my body is fighting so hard.
  • I’m sick and tired of feeling like a guinea pig when a new treatment option comes out.
  • I want off this hamster wheel.
  • I’m sick and tired of being told that I always have a smile on my face and handle it so well. Don’t ask my family how I really handle it. They see me at my worst.
  • I want to truly always have a smile on my face.
  • I’m sick and tired of having liver damage caused by the bacteria.
  • I want any damage to my liver to be caused by too much expensive wine.
  • I’m sick and tired of brain fog making me forgetful.  Wait, what was I going to say next?? Oh, now I remember…
  • I want the only cloudiness I deal with to be weather related.
  • I’m sick and tired of the random ups and downs of symptoms that come and go.
  • I want to ride a roller coaster, not live one.
  • I’m sick and tired of going to the lab for blood tests. And being told how bad my veins are as they poke me repeatedly to find a good one.
  • I want to only be poked on Facebook. And even that can be annoying.
  • I’m sick and tired of getting burned from forgetting sunscreen during a car ride while on medication that makes me sun sensitive.
  • I want to get burned from having so much fun at the pool that I lost track of time and spent the entire day there.
  • I’m sick and tired of telling my kids to see what is in the freezer because I’m too tired to cook.
  • I want to have freshly baked cookies ready every day after school.  …Yeah, that probably wouldn’t happen regardless.
  • I’m sick and tired of taking horrible tasting pills by the handful.
  • I want handfuls of M&Ms.  They melt in your mouth.
  • I’m sick and tired of spending so many hours in bed.
  • I want a Tempurpedic. But I digress. I want to only need my bed at night.
  • I’m sick and tired of my kids searching for socks that match because I haven’t done laundry.
  • I want a laundry fairy. But, again, I digress.
  • I’m sick and tired of a new treatment making me feel better temporarily.  Without warning the improvement ends. It always ends.
  • I want the end to be happily-ever-after.
  • I’m sick and tired of cancelling plans with friends. Or hesitating to make plans in the first place to avoid having to explain why I am cancelling.
  • I want to be a good friend.
  • I’m sick and tired of being a source of information for friends concerned about having lyme. I enjoy helping; I don’t enjoy why I am knowledgeable.
  • I want to have never heard of lyme. Just the green fruit.
  • I’m sick and tired of doctors telling me I have a high tolerance for pain. That doesn’t make living with it any better.
  • I want to be a wimp and cry over a stubbed toe because that is the worst pain I have ever felt.
  • I’m sick and tired of trying to cram in everything fun on days when I am feeling well. I should have learned by now that doing too much at once ultimately makes me sick again.
  • I want to have fun every day.
  • I’m sick and tired of having an illness that I don’t want to discuss because it is so misunderstood and affects everyone so differently.  If I hadn’t personally experienced it, I wouldn’t believe some of it either.
  • I want it to make sense.
  • I’m sick and tired of well meaning people telling me of a friend who tried “X” or a cousin who took “Y” and are perfectly healthy now. I have tried “X” and “Y” and also A-W.
  • I want to find “Z.” I know that will cure me. It is out there. Somewhere.
  • I’m sick and tired of doctors telling me I am a medical mystery.
  • I want to be solved.
  • I’m sick and tired of calling it lyme disease. Disease sounds too permanent.
  • I want it gone.
  • I’m sick and tired of being sick. And tired.
  • I want health.