Ding dong DOMA's dead, and this baby is alive!

My brother and sister-in-law welcomed this little bundle of joy into the world very early this morning.  This is the first time I have ever met one of my nieces or nephews on the day of their birth!  I am usually in a far distant land.  The silver lining of this disease is that I was able to see this bruised lil babe only a few short hours after he emerged.

Yesterday was difficult emotionally accepting I still can't go back to work.  Today I have had an immense amount of pain.  And it is really easy to only think about this illness and all the pain and suffering and heartache that comes with it.

But not today.  Today this lil nugget arrived safe and sound.  Despite his umbilical cord wrapping around his neck causing him to look even more like an alien.  Not only that but he can marry anyone he likes.

DOMA is dead and love is alive.

So thanks lil man.  And thanks SCOTUS.  Perspective is a wonderful thing.  

Apparently awesomeness doesn't cure diseases

I have been spending time in the pool.  My joints have made it impossible to walk or do my physical therapy.  So like an 80 year old I stretch out my legs in the pool.  The other day I was stretching away and a random woman began talking to me.  She asked what was wrong with me.  The minute I said Lyme disease she screamed, 'I can't talk to you anymore.  My friend just died of Lyme disease.'

Awesome.  Thanks for that.

When the doctor told me I was sick I honestly was most fearful of going bankrupt.  Credit scores are important people.  I never doubted that I would beat Lyme disease.  After all most people do beat it, or at least learn how to live with it.

When I first got sick I continued to work for about 3 months.  Bright idea, I know.  As my condition deteriorated my doctor told me it was time to go on short-term disability and head home to stay with my parents.  I was only supposed to be gone for 2 months.  Yesterday that 2 months was extended for another month.

I still have confidence I am going to beat this thing.  But there are set backs and moments of fear.  Yesterday was one of those moments.  Lyme disease is a lot of trial and error.  Which meds work?  How long do you have to rest?  But no answers.  That magical cocktail of drugs that will heal me has yet to be found.  Which is surprising considering my vast knowledge and love for a good cocktail.

If I can jump off a cliff at Victoria Falls over crocodile infested waters, I can surely beat Lyme disease.

The age old question: Which came first the pain or the shoes?

How often do you replace your gym shoes?  I have always been told to replace them every 6 months.                                                                    Yea right.  Don't get me wrong I love shoes.  Particularly high heels.  There have even been gym shoes that I have liked, as pictured.  However, I have never spent more than $50 on any pair of shoes.  This is where you can blame my mother.  Frugality is the backbone of my DNA.

My whole walking to the post office hit a road block.  Not due to a tractor accident or running into too many crazy people.  But rather my right knee.  Not the left knee.  Only the right one.  For the past 3 days my knee has been hating me.  It isn't swollen.  It doesn't seem to be inflamed.  Yet it has been the worst pain I have had this entire disease filled year.

The moment the doctor told me that I would most likely be sick for 9 months.  Once again let me be clear - I am not pregnant.  I told the doctor - NO pain pills.  I am not concerned about long term antibiotic effects, but rather becoming addicted to pain killers.  I have found some natural remedies that help with the pain.  But outside of that I have simply dealt with the pain.

The knee did me in.  I am popping pain pills left and right.  Addiction Smadiction...

Some may say that wearing 2 year old gym shoes could be the problem.  Valid.  Some may say this is residual injury from my bike accident in January.  Valid.  Some may say I am simply growing old.  Valid.

I believe the true reason for the pain is that after 20 days of no sugar my body is revolting.  I bet if I had a piece of cake the pain would go away.

Ultimate dinner theatre

Some may refer to this mindset as vigilante justice.  Round these parts its just what ya do.

While eating dinner on the porch my parents and I saw a guy walk up the street.  This young man then began to scream widely and run into the street and oncoming traffic.  We all stood up, actually my parents did.  I sat in my chair.  Seeing and hearing someone experience a mental health episode made me feel like I was back in the big city.

My brother, his very pregnant wife, and my niece walk through the neighborhood each night.  I thought it pertinent to inform them of this man.  Simultaneously my father was lighting a cigarette and hopping into his truck to 'investigate'.  Very close behind him was my brother and his dog.  Apparently I wasn't warning my brother, but rather instigating.

The young man had taken to the woods.  But they were on his trail.

Apparently someone along the way did call the police.  Probably city folk who were passen through town.  The officer arrived as quickly as he left.  Not to fear an eye witness emerged at the pond! A mother said a socio-path had just ran by.  She clearly never completed my internship training where I stipulate that unless you have the credentials you are not allowed to 'diagnose' individuals.

They scoured the woods as the sun was setting.  Alas, the man was not found.

After further investigation the hypothesis is that this man lives in the neighborhood.  He has been sighted several times with big sticks fighting the air.

To be continued....

The little blue pill

When I was a wee little one my mom would rock me before bed time.  Once I had had enough I would point to my crib and promptly fall asleep.  You're welcome everyone who ever babysat me.

I have always known the value of sleep.  I'm an 8 hour type of gal.  College, grad school, no matter the obstacle I was always going to obtain 8 hours of sleep every night.  The minute my pretty lil head hit those pillows I was fast asleep.  And asleep I stayed until my alarm went off.

Now the only thing going off is my anxiety.  Despite being exhausted I can not for the life of me fall asleep.  Nor can I stay asleep.  And despite not having a lick of alcohol in 5 months, I wake up feeling hung over.

Restless and disturbed sleep is a wonderful symptom of Lyme.  Often times it also brings nightmares, and night terrors, and night sweats, oh my.  After much resistance I finally agreed to use sleeping pills.  They are a tiny little blue pill that up until now would at least allow me to sleep through the night.  Quite the opposite of another little blue pill on the market.

Ah but no, not even the little blue pill (LBP) can keep me asleep.  My new med that is meant to cure someone of the bubonic plague has spat on my LBP.  So in order to catch some un-interrupted zzzz's I now get to add 2 pain pills to the cocktail.

Or maybe I should stop watching the Wire before bed.  That McNulty is such a dog....

2 weeks, 14 days, 336 hours

Yes, to figure out how many hours are in two weeks I used a calculator.

It has officially been 2 weeks since starting my 3rd round of new meds.  It has been 14 days of increased headaches and irritability.  It has been 336 hours of no sugar.

I have never ever in my life gone more than a few days without sugar.  Not even when living in a third world country.  After all that shit is in everything.  This is the point when you shouldn't feel bad for me, but rather those who have to be around me.

Last night for fathers day my sister brought over my favorite cherry pie.  Mom got out the good ice cream.  My niece wanted to sit on my lap and eat her dessert.  For those of you who don't eat with small children much, half of their food ends up on you.

She dropped ice cream on my hand.  I looked at my brother.  I looked at my mom.  Then I stood up and said, 'Someone needs to take her away'.

I love my niece.  I would take a bullet for her.  But I will not hold her while she eats dessert.  Fact.

Correlation or causation that is the question.  Could be the meds or could be the lack of sugar causing the irritability.  In this household we refer to it as PMS on crack.  However, it is clear that the new meds bring new side effects.

In April I began to have chest pains.  They started while I was still working.  It was resume day.  There were a lot of people in a small room.  I began to feel like I was going to drop so I casually tried to walk out of the classroom to get some water.  Half way to my desk it began to feel like someone was stabbing me.  I got another staff person to assist my students and got in my car.  I fully realize how dumb it is to drive, but in that moment I wanted and needed to be home.  Well probably a hospital - apples and oranges.

The chest pains had lessened in May, but these new meds have brought them back with a vengeance.  Maybe if I start eating sugar again they will go away?   

Being covered in warm jelly and other uncomfortable experiences

This morning I had an ultrasound.  Apparently when your liver numbers are up for 3 months doctors worry.  I figured that an ultrasound would be an easy test.  Lay back, take a little snooze, have someone rub my belly, and head home.  Very cat like.  Oh no...that wasn't the case at all.

They jab that sucker into your rib cage.  Have you take a deep breath.  Then break your rib.  Well that is how it felt.  The first nurse told me she finished the test and would be right back....never what you want to hear.  She comes back with another nurse.  The second nurse jabs my side to check things out.

This nurse, in an attempt to chat, begins to comment on my weight.  This always perplexes me.  How come people find it appropriate to comment on someones weight?  In general, people have enough tact to not say someone is fat.  My hypothesis is that people think they can comment on someone being skinny, because they think it is a compliment.

Well nurse, I don't like having the body of a 12 year old girl.

My liver is seemingly okay, but my kidney is suspicious.  The nurse thinks its probably just a genetic abnormality.  I'll be sure to feature that on my match.com profile.

A glimpse into the crazy

I made this gem of a video in April.  I was reminded of it yesterday.  My mom took me to get a second opinion.  The doctor was running through all of the symptoms for Lyme.  He asked if I was irritable.  My mother and I began to laugh hysterically.  Not helping the 'I promise I'm not crazy' case.

One of the most annoying things about Lyme is how irrational it makes me.  I do my best to hide it and keep the crazy on the inside.  But in case you need a laugh this Monday here is a glimpse into the crazy.

For some reason the video wouldn't uploaded.  I then became irrationally frustrated.  All told this blog has taken me 4 hours to get online.  As always, the irony isn't lost on me!

What the hell do you do all day?

I don't look sick.  I don't think I look as good as I did say in January.  But I didn't loose my hair.  I've lost weight, but nothing dramatic.  Usually when people see me their first comment is, 'Wow, you don't look sick at all'.  Is that a compliment?

The flip side of not looking sick is that it's hard for people to understand you actually are sick.  This is one reason why so often people with Lyme are told that it is all in their head.

I started writing in an attempt to help people understand.  One question I get a lot is - well what do you do all day?  I jokingly compare Lyme to princes behavior.  Here is why:

9:30am - wake up and begin the nausea battle
10am - make it downstairs, grab some toast, plop on the couch - round 1 of meds
11am - it usually takes me an hour to eat two pieces of toast while watching some mindless television on a very low volume.
12pm - round 2 of meds and the start of physical therapy aka walking to the post office
1pm - attempt to eat lunch.  usually I am too exhausted at this point to make food.  my mom leaves me lunch or makes it for me.  princess behavior.
2pm - round 3 of meds, which leave me full of headaches and the need not to be in light
3-5pm - downtime.  i usually retreat back to my room to turn lights and noise off.
5-9pm - round 4 of meds and attempting to eat. usually my best time of day
10pm - round 5 of meds and attempting to sleep

This is the complete opposite of my normal.  I used to wake up at 5:30am to bike to the gym before biking to work.  Expectations have always gotten me into trouble.  So I get it - you see someone who looks healthy and you expect them to be healthy.  It takes us all a while to get there.  But lets call a spade a spade - Lyme disease looks like someone is simply lazy.

Which for all of you who don't know me is hella ironic.  But my experience has been that everything about this disease is ironic.  Sing it Alanis

A tractor, golf cart, and an old man

My friend called me once for job advice.  This wasn't the first time she asked me about the scenario.  So instead of answering I asked her a question, 'You know exactly what I am going to advise you to do, and we both know you are going to do the opposite.  So why are you asking?'

Most people aren't really asking for advice.  If I want to hear something I ask a certain person.  I have people for: career advice, relationship, guy perspective, friendship, no bull shit, positivity, support, and that friend who you can call who will go out and help you forget everything.  I know these things before I call.  I knowingly pick my advice.  So don't change what you tell me or it will throw my whole system off tilt.

I find myself starting to do this with my doctors.  The different opinions is frustrating; however, I am starting to use it to my advantage.  I love to exercise and be active.  My first doctor put crazy limits on that.  The specialist in NYC told me to exercise everyday - even when it is painful.  Most importantly he told me I can ride my bike again!

Because I constantly need goals and projects I have come up with a great idea!  I love getting mail.  I love writing letters.  It is a lost artform.  You may not know this but not everyone has mail delivery.  My parents have to go to a post office to collect their mail.  So each day I will write a letter then walk a mile to the post office to mail it.

Today I passed a tractor, two men on a golf cart, and an old man sitten on his front porch.  Best believe that by the end of the week I will know his name and his partial life story.

If you would like a letter send me your address!  

A Farewell Ode to Sugar

One of my all time favorite places is the gas station.  Fountain pop, candy galore, and so many wonderful treats.  My dad goes to the gas station everyday.  As a child I would beg to go with him.  He would let me pick out one thing.  Since I love gas stations I also love road trips.  Yes, there is a direct correlation.  If I am in the car for more than an hour I am justified in stopping at a gas station.

On Sunday my mom and I drove to New York.  On Monday we drove the 11 hours back home.  After a 2 hour stop over at the doctor.

Lyme disease is silly.  One of the most frustrating things is that I have seen 3 different doctors, each of which advised a different course of treatment.  I don't mean they think a few different things.  I mean everything.

Except for one thing.  Sugar.  No more sugar.  Zero.  None.  It's like the universe is telling me I am fat and have to diet.  There is cake in the kitchen and it mocks me.  Oreos chuckle as I walk past the cabinet.

I have had 25 cavities.  My initial attempt at eating better was to have my mom make me a double batch of homemade frosting with 'real sugar'.  It wasn't processed sugar.  So whats the harm.  Well the harm is that I'm not better.  Now the rule is ZERO added sugar.

If this hasn't convinced you of my love for desserts and sugar.  Not once, but twice I have ended relationships over dessert.  One guy ate the rest of my mom's pie she made me.  The other asked me where I wanted to go for my birthday dinner.  I told him I was up for any place that had a kick ass dessert menu (aka creme brule).  He took me to a restaurant that didn't serve dessert.

Sugar.  I love you.  I will miss you everyday.  I will send you light, love, and calories each time I think of you.  Till we meet again....