Category Archives: Illness

Invisible Illness Week: Thirty Things You May Not Know About My Illness(es)

30 things you may not know about my invisible illness mod

This week, my fellow sick bloggers and I were asked to answer 30 questions.  And by sick, I don’t mean “Dude, your blog is sick, yo.”   The questions are for “Invisible Illness Week.”

Hopefully the answers will help spread awareness of problems caused by chronic illnesses that are unheard of.  And unseen.  An invisible illness is one that may wreak havoc on the patient but to the rest of the world will elicit a response of “but you don’t look sick!”

1. The illness I live with is: I have two – Chronic lyme and lupus.  I won’t give them the power of using capital Ls in their names.

2. I was diagnosed with it in the year: “Lucky” ’07.

3. But I had symptoms since: Possibly since I was in middle school. My doctor thinks when I couldn’t straighten my knee for months in 6th grade (and was diagnosed with juvenile rheumatoid arthritis after they couldn’t figure out why) that it could actually have been when I contracted lyme.  I teeter between believing that theory and thinking that it’s crazy.

4. The biggest adjustment I’ve had to make is:  I’ve had to accept that I may need to cancel plans at the last minute.  My symptoms are more unpredictable than the weather and they can come and go like a storm system.  I always have to be prepared to take cover (under my covers) when hurricane lyme throws me for a loop (or lup?).   I hate inconveniencing others so backing out on something at the last minute makes me cringe.

5. Most people assume: I’m fine.  Because that’s what I tell them when they ask.

6. The hardest part about mornings are: Feeling hungover.  At least with a real hangover, you get to enjoy yourself the night before.

7. My favorite medical TV show is: Scrubs.  I watch TV to zone out and forget about my medical problems, so I don’t want serious medical shows that remind me of them.

8. A gadget I couldn’t live without is: My computer.  I can plop it on my lap and stay connected via social media even when I’m in bed all day.

9. The hardest part about nights: Both lyme and lupus are the ones that “party” at night.  Staying asleep is always a challenge.  It’s a big complaint of many patients, but I don’t know the cause. Terrible night sweats is one symptom that interrupts a good night sleep for me but even when that goes away temporarily, deep sleep is difficult. I can’t remember the last time I slept for 8 hours straight.   As I’m typing this, it is 2am.

10. Each day I take __ pills & vitamins: This varies.  It has probably been as high as 30-40 because the dose of many supplements is more than one at a time and more than once a day.  But then I get tired of taking them, rebel and take none.  Right now I’m taking none and I can tell it’s taking a toll.

11. Regarding alternative treatments I: Used to be the biggest skeptic.  I still fight with my skepticism when my doctor mentions some new and wacky sounding treatment, but I’ve learned that the alternative treatments are necessary and beneficial. And expensive.

12. If I had to choose between an invisible illness or visible I would choose: Invisible.  I like being able to seem “fine” when I’m out in public.  I don’t want to be known as the pitiful sick lady.

13. Regarding working and career: There’s no way I would have the energy or cognitive function for a full time job.

14. People would be surprised to know: How much time I have to spend in bed.  When I’m out, I look fine – and for the most part, I AM fine at that moment.  I’ve learned what I need to do to “plan” for outings – how much rest is required before so I can make it through without showing any symptoms.  Unfortunately that means many hours of resting before and after, plus staying home a LOT when I’m not up for putting on a façade.  Some people comment on how busy I am, but would be shocked to find out how little I am actually able to do on a daily basis.

15. The hardest thing to accept about my new reality has been: The type of Mom it has turned me into. I always wanted to be June Cleaver, not Peggy Bundy.

16. Something I never thought I could do with my illness that I did was: Hmmmm.  That’s a tricky one.  It’s easier to list what it prevents me from doing, not what it’s enabled me to do.  But I guess it has allowed me to be able to say I’m one tough cookie.  Multiple doctors have commented on my high tolerance for pain.

17. The commercials about my illness:  I don’t think there are any.

18. Something I really miss doing since I was diagnosed is: Being spontaneous. I feel like I have to plan out every minute task or activity based on how much energy it will require.

19. It was really hard to have to give up:  Now here’s the easy question. I had to give up wanting to be the “do-it-all” Mom.  Deep down I’m the annoying Mom who wants to pack heart shaped sandwiches on Valentine’s day and  make personalized hand-stamped Christmas cards and thinks I have to bring made-from-scratch desserts to pot lucks.  I love being room Mom, team Mom, PTA Mom…Super Mom.  But really what I am is just Super Tired.  I forget to even pack lunches many days and I haven’t sent Christmas cards in 5 years. But I DO still bake from scratch on occasion and can’t help but say yes when a coach or teacher is asking for help…knowing my body will make me pay the price later. I’m my own worst enemy.

20. A new hobby I have taken up since my diagnosis is: Blogging!

21. If I could have one day of feeling normal again I would:  just do all the normal things that most people take for granted.  Take a long shower without the heat wiping me out.  Go grocery shopping AND unload the groceries without needing a nap in between.  Make dinner without a foggy brain causing me to forget ingredients or burn it.  Oh, and I’d also run and run and run some more.  I can remember the exhilarating feeling of running full speed.   Now some days just walking is a chore.

22. My illness has taught me: To prioritize what’s most important in my life.  I’m still not good at saying yes to the right priorities.  Too many days I spend all my energy on the wrong ones because I am terrible at saying NO (as shown in #19). But I do try not to sweat the small stuff as much.

23. One thing people say that gets under my skin is: That chronic lyme doesn’t exist.  I don’t understand how thousands of people can report the same ongoing symptoms, yet part of the medical community treats us like we are insane.  One big reason I hesitate to talk about my problems with lyme is that I know there are people out there that don’t believe it is a real thing.  And on top of that there are people in the lyme community that don’t believe I have lupus.  They attribute all the problems to lyme (you’d think after being doubted themselves, they wouldn’t doubt others).  While many of the symptoms of lyme and lupus are very similar, I have a few that are specific to lupus.

24. But I love it when people: Force me to occasionally accept help.  I will say I don’t need it when asked, will almost never ask for it and generally hate being the helpee instead of the helper… but every once in a while it seems to come when it is needed most.   During a particularly fatigued week, a friend texted me “I’m dropping off dinner on your porch in 20 minutes.  No argument!” I hadn’t told her I was having a rough week, but it was like she had some way of knowing that my fridge was empty and the menu choices that week had consisted of “who delivers.”

25. My favorite motto, scripture, quote that gets me through tough times is: “God won’t give you more than you can handle.”  God thinks I’m a badass.

26. When someone is diagnosed I’d like to tell them: Well, I will first answer with what I DONT like to tell them.  I don’t like to tell them too many details about my journey because they don’t need to hear a worst case scenario.  I do tell them to talk to their doctor about every single weird symptom they may be having.  Nothing is too small to mention because it may help connect the dots for a complete diagnosis and determine the best treatment.

27. Something that has surprised me about living with an illness is: How it has turned me into an academy award worthy actress.  I amaze myself at how well I can hide how miserable I’m feeling sometimes.

28. The nicest thing someone did for me when I wasn’t feeling well was: When I was first diagnosed, I got a PICC line for IV antibiotics put in my arm.  I got a blood clot (thanks to a Lupus related disorder) so the doctors had to put a new PICC line in my neck (my Frankenstein era). The doctor restricted my activity so a friend came by multiple times, picked up my DIRTY LAUNDRY, took it to her house and brought it back clean and folded. That’s true kindness to let me literally air my dirty laundry.

29. I’m involved with Invisible Illness Week because: Of #17.  These illnesses aren’t in the mainstream media.  But they need to be. Now that I have a voice through my blog that can reach many, I feel like it’s my responsibility and duty to talk about it.  Even if I have to figuratively air my dirty laundry to do it.

My 5 year old maturity level is making me chuckle at the fact that I just said doodie

30. The fact that you read this list makes me feel: Thankful.  Hopeful.  And vulnerable.

And while I intend to start discussing lyme and lupus more online, I still find it hard to talk about in person.  So if you see me in real life and ask how I’m doing, let me continue to answer “fine.”  My version of fine just happens to be different from yours.

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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NYC Part 3B – My Lunch with Melissa Gorga of Real Housewives Of New Jersey

For those of you just tuning in, I recently went on a whirlwind trip to NYC including lunch with Melissa Gorga – courtesy of Voli Light Vodka – for winning their Housewife Heroes contest.  I wrote a guest blog post on Voli’s blog about it!

For those of you that have read the rest of the journey, you’ve made it through the “bad and the ugly” parts about my mishaps, trials and tribulations.  Now you will be rewarded with the good.  The fancy-schmancy parts of the trip.  The conversations I had with Melissa.  The pampering.  But to read about it you have to click HERE or the link below!

Click here for my guest post—->

No catchy title for this post.  I thought about calling it “In a New York Minute” since the lunch – and trip – seemed to be over in the blink of an eye.  But I went with shameless celebrity name dropping instead to attract more readers.

The Voli blog post is just the tip of the iceberg.  And there were times I felt like the Titanic. In case you missed it, MUCH more about those stories of the trip can be found in these links…

NYC Part 1 – Getting in an Empire State Of Mind

NYC Part 2 – I Had the Time(s Square) of My Life

NYC Part 2B – Hey Waiter, There’s a Tree in My Drink

NYC Part 3 – In the Lyme Light with Melissa Gorga

NYC Part 4 – The Neon Lights Are Fading

Plus, there was an official press packet that was picked up by some “celebrity” blogs.  They all say pretty much the same thing but I had to include multiple ones.  What can I say…seeing my name with all the celebrities made me all starry eyed.


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NYC Part 3 – In The Lyme Light with Melissa Gorga

(To read the parts of the NYC trip that you may have missed, click here.)

I promised you the good, the bad and the ugly when writing about my trip to New York.  I intended to give you the good first, with a post on Voli’s blog about the fabulous parts of lunch with Melissa.  It is taking longer to get on their blog as a writer than anticipated so, unfortunately, you get the bad and the ugly now instead of later.  The “Yes, this crap really happens to me all the time” version of the day.

I wanted to JUST have a best-lunch-ever-living-the-good-life-for-a-day story to share with you about my lunch with Melissa.  I think that’s what everyone wants to read.  What everyone wants to hear.  Don’t get me wrong.  It was an incredible experience.  But, as with most things in life, perfection is rare!

Living with Lyme Disease means that when I stress too much or do too much, my body freaks out on me.  To put it in more official terms, it has an inflammatory response.  It can happen suddenly.  The morning of lunch, I guess my body decided to punish me for stressing too much.  And for having too much fun the day before.

I woke in a fog, with a swollen face, hands and feet and feeling as if I had been hit by a truck.  I knew the feeling all too well.  Usually I can just hide in my bed when I’m feeling this way.  And usually when I have something major going on in my life, adrenaline seems to get me through it.  I usually don’t get ill until AFTERWARDS.  But not this time.

I dragged myself out of bed.  I stared in the mirror and wanted to scream.  “Damn you body!  Not today.  This is my weekend to be a princess.  It isn’t midnight yet.  And I’m not supposed to be the one to turn into a pumpkin!” 

I instantly put on my special  high-rise shoes.  I knew that if I was already swollen, that it would only get worse as the day went on.  I had already bought the shoes a size too large, just in case.  But if I waited too long, there was no way I’d get them on.

Fortunately, before the trip, my hair stylist had suggested a keratin treatment that makes my hair easy to straighten for about a week (Not the straightener with formaldehyde, I have enough toxins in my body without adding that.).  I made an appointment for the keratin, plus a haircut and highlights.  UNfortunately, my stylist decided to move to Utah the week before the trip.  The nerve.  I was able to switch the appointment to a new stylist for the keratin but didn’t want to risk a hair cut or highlights with someone new.  So I had grey roots, split ends and bangs in my eyes.  But even though every inch of my body hurt, I was able to have straight hair.  Small victories.  I planned to curl it and make it look all fancy and shiz, but that wasn’t in the cards.

The foggy feeling is appropriately called “brain fog” and it makes me so ditzy that if it had happened the night before, I probably would have thought the rosemary sprig in my drink actually WAS a tree branch.  Of all the symptoms of lyme, I think I hate the cognitive ones the worst.  Feeling like your brain won’t work just plain sucks.

While laying in bed, having a mini pity party over how I felt and trying to muster the energy to make my hair look more glamorous, the fire alarm went off.  I kid you not.  Lights flashing.  Alarms sounding.  Did I mention we were on the 16th floor?  And that I was wearing a bathrobe?  It went on for 15 minutes.  It turned out to be a false alarm.  They were just testing the detectors.  A little heads up would have been nice…

I pulled myself together before George, the make-up artist, arrived.  It was very hard not to put make-up on.  I mean, he has met a lot of celebrities and was going to see me with NO make-up on.  Yikes.  But I realized how silly it would be for me to put make-up on, just for him to remove it to work his magic.

I had turned the TV on that morning since some of the morning shows are broadcast in NYC.  Seemed like the thing to do since I was there.  Access Hollywood was doing a special live broadcast from Rockefeller Plaza which was only a couple of blocks away.  Jim had gone out to buy something for me.  OK, I must admit…I made him go buy Spanx for me at THE Saks 5th Avenue.  I guess I thought making my butt look smaller would detract from the puffiness.  Who knows.  But he went to get them.  What a nice husband.  Shopping in the lingerie section of a 10 story department store.  Anyway, I digress.  Jim came back carrying the little shopping bag and said he had walked by an area by Rockefeller Plaza that was blocked off for a show and had tried to get close enough to see what it was.  I pointed to the TV and he realized it was Access Hollywood.  Pretty funny that he walked by the show I was watching.  (That story would have been much funnier if I had actually seen him in the crowd.)

When George arrived, I was worried he would have an “I can’t believe I have to waste my time doing make-up for this nobody housewife, when I usually do make-up for THE Housewives” attitude but he couldn’t have been nicer!  We talked a bit about Access Hollywood and then Jim announced that he was going out for a cup of coffee.  After he left, I was SURE he was going to go back to the Access Hollywood location and start making a fool of himself to get on camera so I’d see him on TV.  But he really did just go get coffee.  I guess he just wanted to leave because watching me get my make-up done was about as exciting as watching paint dry.  I guess it pretty much IS watching paint dry.

Snooki and JWoww from Jersey Shore were on Access Hollywood, talking about a new show they are going to be on.  I recognized Snooki but had to ask George who the other girl was. He knows them both and has hung out with them.  On the Jersey Shore, of course.  The place, not the show.  When Jim returned with his coffee, he looked at the TV and announced “I’ll have to tell the kids that I walked by iCarly and the girl from Victorious.”  Yes, Jim was serious.  That’s who he thought they were.  I’m sure George just shook his head at our cluelessness.  We should have studied up on our reality stars before the trip.

lunch with melissa 1a

My make-up session took over an hour (as opposed to my usual 5 minutes), so when George finished, it was time to head to the restaurant.  I quickly changed my clothes and tried to fix my hair that had been held back by clips.  Unfortunately, pre-hairsprayed hair clipped back for an hour is pretty much going to stay put exactly where it is.  One last spray to try to keep my bangs where I wanted them and not where the clips put it was unsuccessful.

Oh well, not the perfect health for the day.  And not the perfect hair.  But my make-up looked good.  And I had my nice, new expensive outfit.

During one last glimpse in the mirror, I noticed some black spots on my shirt.  Apparently that fabric didn’t like hair spray.  They wouldn’t go away.  Gah.

Now not the perfect outfit either.  No time to fret, and off we went to hail a cab.  Swollen body, messed hair and stained clothes and all.

(I need to leave some topics to write about on Voli’s blog so will talk more about the make-up session and George then!)

From the moment we arrived in NY, I had noticed every single crack, chip, hole and grate in the sidewalks.  I had repeatedly commented about how careful I would have to be when walking on the uneven sidewalk while wearing my ridiculously high-heel shoes.  Since I was in a complete fog that morning, I didn’t heed my own warnings.  I completely forgot about the fact that I was standing on 3″ stilts.  Within 10 steps out of the hotel, I stepped on a crack and almost broke this Momma’s back.  Or ankle.  Completely turned my foot over and was going down.  Luckily Jim caught me so I didn’t end up sprawled on the ground.  I realized I hadn’t buckled that shoe.  I’m not sure if that helped cause the fall or it prevented me from actually breaking my ankle since my foot was able to slip out of the shoe as I went down.

The almost wipe out snapped me out of my stupor for a bit.  We arrived at the restaurant and I was semi-functioning cognitively.  Semi.  As the lunch went on, I could feel myself going down hill again.  I had so many questions to ask Melissa and I forgot to ask her at least half of them.  I tried to so hard to focus and remember but I was just blank.  I especially wanted to ask about her book deal but…blank.  I had printed out the story from my contest entry that won me the trip to take for her to autograph.  But I left it at the hotel.  Luckily I was at least able to answer most of the questions Melissa asked me without sounding like a total idiot (I think.)

I kept pulling my sleeves down as far as I could, to try to conceal my increasingly puffy fingers.  I don’t know what causes the swelling.  I guess my body takes the word “inflammation” literally.  There are so many times I will see someone one day who will comment “Wow, you’ve lost weight so fast.  What’s your secret?”  I want to answer “Ask the effing lyme bacteria.  I guess they are tired today and didn’t feel like adding on 10 pounds of swelling like they do most days.”  But instead I usually say “Thanks.  It must be a slimming outfit.”

(Again, I will write about all of the AWESOME parts of lunch on Voli’s blog.  Sorry you are getting the crappy parts here.)

By the time we got back to the hotel, my feet were bulging out between the straps of my shoes.  I didn’t take any photos of that.  I know I promised the good, the bad and the ugly.  But that was just TOO ugly…

Speaking of photos, sadly I don’t even have many from the lunch.  There was an official press photographer there and we were told we’d get all the photos sent to us.  I guess by “all” they meant just the ones approved for press release.  I’ve requested photos from 3 different people and get the same handful of pictures sent to me, even though the photographer was snapping for 2 hours.

Honestly, I hate the photos anyway.  And not just because I’m next to the woman who was just named the second most beautiful reality star.  I hate them because, as the lunch progresses, I can see the strained “just smile so no one will know how bad you feel” expression on my face get worse and worse.  It probably isn’t apparent to anyone else, because I’ve perfected it pretty well.  But I can tell. Hey, the one perfect thing of the day.  My perfect fake smile!   I mean, the photos are fine.  But I didn’t want “fine.”  I wanted best-photos-ever.  This was supposed to be my Cinderella day.  Supposed to be my day to shine.  But I was feeling very dull.NYC Part 2 Ride the Horse Gangnman Style

I wanted the photos like the day before when we arrived in New York.  The day I felt great. Those are real smiles.  Those photos are ME.  The me that comes and goes now.  The me before I became ill.  The me that dances Gangnam Style in the middle of time square.  The me that smiles.  Really smiles.


And now for a glimpse of the happy times I will be writing about on Voli’s blog…

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Private dining room!
Lunch with Melissa 1 my blog
Personal bartender and any Voli vodka drink imaginable!
Lunch with Melissa 2 my blog
Waiting for Melissa to arrive.
Lunch with Melissa 3 my blog
Yeah, even the fake smile wasn’t perfect…
Lunch with Melissa 4 my blog
The arrival. Melissa is a tiny little thing but not sure why I look 6″ taller than JIM in this photo.
Lunch with Melissa 5 my blog
Believe it or not, she is even more beautiful in person!
Lunch with Melissa 6 my blog
Funniest moment.
Melissa was trying to drink through a stirrer.
Lunch with Melissa 11 my blog
A toast to the housewives.
Lunch with Melissa 7 my blog
Can I just add how much I love Melissa for ordering a steak for lunch? And how much I hate her for ordering a steak for lunch…and being able to weigh 100 pounds! 😀

Lunch with Melissa 8 my blog Lunch with Melissa 9 my blog

I will let you know the link to Voli’s blog when it is posted (after approval, so may take a while).

Next up here…”NYC Part 3B – They Say The Neon Lights Are Bright”

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Blowing Chunks or Blowing Smoke?

The dreaded words first thing in the morning for me are “Mooooom, I feel like I’m going to throw up.”  The one thing that can’t be proven true or false until it is too late.  Flu?  Check for a fever.  Strep throat?  Get out the flash light.  But vomiting?  No way to know for sure.

My kids are not morning people (NO idea where they get that from…) so frequently come up with excuses for why they can’t possibly go to school that day.  Unfortunately, the excuse of choice now seems to be the threat of hurling.

You see, I used to feel confident in my ability to spot a faker.  I could smell one a mile away.  The conversation used go like this…

Me: “Time to get up for school!”

Kid: “I caaaaan’t.   I feel like I’m going to throw up.”

Me: “OK, just lay there.  Sometimes it goes away once you wake up.” (Hope: they will forget and in a few it will just be a normal yawn, not a technicolor one.)

Me (5 minutes later): “Time to get up for school!”

Kid: “I caaaaan’t.  I feel like I’m going to throw up.”

Me: “Ok, get up. Quick!  Go stand over the toilet!” (Hope: that standing over the porcelain god will make them realize they don’t want to pray to it.)

Kid (5 minutes later): “I didn’t throw up…but I still feel like I might.”

Me: “Let’s go eat some toast.” (Hope: if he doesn’t lose his breakfast, he won’t ‘lose his lunch’)

Kid (after eating the entire piece): “It didn’t help.”

Me: “Eat this cookie.” (Hope: if you can eat a cookie, you won’t toss your cookies.)

Me (after cookie is inhaled): “Time to get dressed.”

Kid: “I caaaan’t.  I still feel like I’m going to throw up.”

Me: “Nope, the cookie always works.  It’s a fact.  Let’s go.” (Hope: throwing out absolutes like ‘always’ and ‘fact’ make it clear the throwing up conversation is over.)

Fast forward to after school…

Me: “What’s up, Chuck?  How was your day.”

Kid: “Great.  But who’s Chuck?”

This scenario replayed time and time again.

Until the day it didn’t.

Within 5 minutes of arriving at school, it happened.  I won’t say who it happend to, because it is still a touchy subject.  But he threw up.  In his classroom.  In front of all of his classmates.  All over the place.  It wasn’t fake this time.

I was mortified when I got the call.  When I arrived at school, I got the one-eyebrow-raised look, along with the words  “He said he told you he was sick this morning.”  Yep, he did.  For the 5th time this month.   The other 4 times I was RIGHT.  Can’t we just focus on that??

I wanted to start spouting “the boy who cried wolf” life lessons but instead rushed to the car with my tail between my legs.  Guilt mounted as I listened to a regurgitation (pun intended) of every itty bitty minute detail of what happened.  I started to feel sick to MY stomach over the incident.  Not because of the grossness, but the humiliation!

Since then, the conversation has changed to…

Me: “Time to get up for school!”

Kid: “I caaaan’t.  I feel like I’m going to throw up!”

Me (while already dialing the school absentee line): “OK, sweetie.  Feel better and get back to sleep!”

Unfortunately, kids can smell fear a mile away.  They know I’m terrified of a repeat of the catastrophe.  That my “faker” radar is broken.

The frequency of “sick days” keeps increasing.  But every time, they are out of bed and fine by 10am.

Don’t get me wrong.  I’m thankful they aren’t puking all day.  I don’t want them to be puking.  I just want them to be not puking AT SCHOOL.

I just know the first time I push one of them out the door, I’m going to get the dreaded call.  And the dreaded look.  And the dreaded guilt.  So they stay home. “Sick.”

I’m not sure how many more of these days I can stomach.  I need a way to know if they are truly nauseous or if it is just another nauseating attempt to sleep in.  I have no patience with the patient once it is obvious that they are, in fact, well.  By the end of the day, I’m so annoyed that I got suckered again that I should probably call it a “sick of YOU day!”

Maybe I should send them to school with a note that says “Watch under.  He may chunder!”


Does anyone else have problems with kids staying home from school for not-so-sick days??

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.