The importance of zippers

Pre-Lyme the most important zipper in my life was the one that kept my mouth shut.  I may be a bit of a smart ass, and sometimes sarcastic...

Today, a new zipper was important.  Twice a week I give myself B-12 injections into my thigh.  Every now and again I hit a small vein and have blood spurt out.  Today was one of those days.  Whenever that happens my leg is quite sore, making walking difficult.

As I hobbled up the stairs to work I greeted the students for the last time.  We had our moment of witty banter, and then I plopped down in my desk chair.  I was instantly reminded of why I hadn't worn these pants in months.  The zipper is busted.  You can zip it up and zip it down but regardless your fly is open.

Happy last day, and here is to going onto disability with style.

Control, independence, and other relationship hindering characteristics

Every character trait is subject to the eye of the beholder: laid back or lazy, planner or anal, kind or nieve.  The hope is we find a beholder that sees the positive side of our traits.

In an effort to convey how sick I was my doctor told me, 'One thing - you get to do one thing a day'.  It has taken me 2 months to finally accept that until I only do 'one thing' I will not get better.  Initially I figured that the 'one thing' was cleaning my apartment, verses doing the dishes.

As I have gotten sicker I am now realizing that my 'one thing' is really 'one thing'.  If I do my dishes that is it for me for the day.  I haven't gone to the grocery store in over a month.  I haven't cooked any meals that can't be made in the span of 3 minutes.  Chopping up fruit for a smoothie was abandoned about a month ago.

If I can only do one thing a day that means there are a ton of daily life items that I can't do.  I'm not a 'can't do' gal myself.  Lyme disease for a gal like myself is the bitch slap heard round the world.

It didn't take a disease for me to realize I am horrible at asking for help.  Nor did I need to get sick to realize I am independent and like to control situations.  I am a trained social worker - and a good one at that.  I know these things about myself, and have a list of ex-boyfriends for reference.  I am not a damsel in distress. When I get knocked down I pick myself up.  This isn't my first dance at the 'life sucks' rodeo.  I am a platinum member at the school of hard knocks.

But Lyme disease doesn't let me be me.  I can't take care of myself anymore.  I am no longer physically able to live by myself.  I have begun losing weight because I just can't cook myself food.  My apartment is beginning to have a distinct odor.  And my personal appearance is beginning to take a hit.

Tomorrow is my final day of work.  I had to pause for a few minutes after typing that.  It is one of many signs that I have to put my independence on the shelf.  I can't control this situation, but I can trust that one day in the near future I will get my independence back.  And it's gonna be one hell of a party.

Lyme Disease the Constant Hangover

You had an epic evening.  You put together a new outfit, you drank, you danced, you threw things, you drank, you wore sexy impractical shoes, you drank more, you ate Jumbo Slice, you drank, and then you slept in your clothes.  Epic.

Then you wake up the next morning.  You can't lift your head from the pillow.  The idea of food makes you worship the porcelain gods.  Drinking water seems as difficult as solving peace in the Middle East. Your day is now consumed by hydration, force feeding toast, and laying on the couch.  Loud noises make you want to die.  Your entire body aches, as you vow to never again drop it like its hot.  Each time you stand up you are overcome with dizziness and nausea.  You are now unable to do anything productive.

Lyme disease is the worst hangover of your life without any of the fun parts.  No dancing on tables.  No sexy shoes.  No pizza.  No staying out till 4am having the time of your life with friends.  Yet the next day and every day after that....all the consequences.

For those of you that this post gave weekend flashbacks I am sorry, but Lyme isn't well understood.  Hangovers are.

What I wouldn't give to be able to eat a piece of pizza.....

How My Hair Landed Me In The ER

I have never been good in heat, which is why I stay out of the kitchen.  However, Lyme disease has taken this trait to new heights.  In February my ability to stand up became compromised.  You know when you stand up too fast and things go blurry?  That began happening to me each time I stood up.  By mid-February about 5-10 times a day everything would go black, followed by seeing spots.  Once heat entered this equation staying upright became a challenge.

Once I started treatment showers quickly became problematic.  Lyme is sensitive to heat.  Meaning that the Lyme comes out of hiding when the body is heated to a certain temp.  Suffice it to say, when the Lyme comes out I go down.

My mom had come out for my first few days of treatment to help me get prepped for this battle.  She left Monday morning at 6am.  Monday at 6pm I took a shower.  I started to feel sick so I got out of the shower to get some water.  Then I woke up on floor, my head pounding, my heart racing, and 5-20 minutes of my life unaccounted for.  After some detective work I deduced I hit my head on a granite counter top and possibly a chair, and was out for about 5-10 minutes.  The doctor told me I had to go to the ER for a CT since I am on a high level of blood thinners, and because I'm not actually a detective.

One night in the ER and a clear CT later I was told that I need to stay lower to the ground.

I had long hair.  Long hair takes a while to wash.  Short hair takes less time.  Faster is better.  I now have short hair, yet the same amount of sass.

Dry Heaving

Most of us don't know what type of sick people we will be until we are sick.  I, on the other hand knew damn well what type of sick person I would be.  I don't mean the person I am around others or at work.  Rather, I mean the sick person I am alone or around family.  I am painstakingly aware of how pathetic I become when I am sick.

I first got sick with Lyme the same day that my new group of interns started.  I had gone to the gym then biked into work.  As I drank my fruit smoothie I started to get a headache.  I don't get headaches.  Within 10minutes I was on my hands and knees crawling to a trash can to puke.  As my co-worker was holding my hair back the receptionist walked in to tell me my interns were in the lobby. I asked for a piece of gum.  Straightened my dress.  Stopped by the bathroom to drop off my puke bucket, and then walked into the lobby and welcomed the interns.

Despite having to lay under my desk for 30 minutes and my Executive Director getting me soup I think I held it together quite well.  For this Thursday Throwback here is the type of sick person I am at heart. *Apologies - I drop the F bomb twice, and don't know how to bleep it out.  Sincerely, Sailor Sadie*

Needles for dummies

Before I knew the Lyme was back I had decided to do a 21-day vegan challenge.  A friend thought this challenge would make for good t.v and asked me to document my journey.  The 'Vegan Files' led right into the 'Lyme Files'.  

When the time came for me to give myself my first shot I decided to channel my inner Rocky.  Pick a theme song: Hit Me With Your Best Shot.  Turn on the video camera, and jam a needle into my stomach.  To reassure you, I have since streamlined this process. 

Toes

Lyme disease rears its ugly head in many different ways.  One of the most annoying/gross ways for me is what it does to my toes.  I am on quite the dose of blood thinners to improve my circulation, apparently Lyme disease has caused my blood to be thick.  At least 5 times a day my toes swell and turn multi-color as seen here, and yes I do see the irony in my nail color choice.

For the first month of treatment weird things would happen to my body.  Some went away and some stuck around.  But these damn nasty ass toes just don't seem to want to leave me.

Why am I grossing everyone out you may ask?  I found a solution!  So to all of you with Lyme disease who were hanging your feet in shame - get a pedicure!  Some of you who know me well may think this is just a ploy since I love my mani/pedi time.  But there is science behind this.  The best way to kill Lyme is heat.  This is problematic for me since every time I am in heat I pass out.  However, a pedicure is localized heat and massage to get the blood flowing and kill the Lyme.  The hot stones, warm foot bath, and sugar scrub are my solution.

Simply look at the difference:

My toes will be gross again tomorrow, but the reprieve from the gross and the pain is well worth the cost.  More accurately - thanks for the gift card mom :)

Fighting

After graduating college I went on a journey.  I lived with an organization dedicated to actively resisting the atrocities in their country.  Non-violence is often seen as 'passive'.  There was nothing passive about these women.  They knew that if they took to the streets to demonstrate demanding access to water they would be beaten and jailed.  What they also knew was that their credibility grew if they didn't fight back.  They fought to not fight.

After one demonstration I was called over to a car.  In the car was a mother and her baby.  The baby couldn't have been older than 1.  She had one lone tear stuck to her cheek.  When the police officers were beating the women they also beat the baby with a baton stick.

I don't have any children, but I four nieces and nephews.  My niece is currently the same age as that baby was.  Not only would I not remain non-violent, but I am pretty sure there would be a line of people behind me.  My brothers dog would probably be more effective than I would in my current state, but the sentiment is all the same.

The mindset is that there is a right and a wrong.  That there is rule of law.  That we have a right to freedom.  That bad things are punishable.  That if something bad happens to us - we are allowed and able to fight back.  Because when we don't feel like we have the power to fight back we lose a part of ourselves.  Going back to my parents house and doing nothing isn't my natural way of fighting.  But every minute I spend resting is my own active resistance against this disease.

Maybe I'll make a t-shirt.

Die Off

It is a perplexing term to me.  Today I had to call out sick because the pain and nausea were completely debilitating.  Call me crazy but I don't feel comfortable driving a car when I can't walk to the kitchen without everything going black and me having to sit down before I fall down.  My mother made me call the doctor.  His reply was that this is die off.

Out with the old, in with the new.  Let your old self die and be reborn in (insert religious figure).  Stop X behavior to become a better person.  There seems to be a theory out there that something or some part of us has to die for us to get better.  It is never portrayed as an easy thing, but a necessary thing all the same.

I liked what was inside of me.  I personally didn't think I had anything to die off.  I am sure there is a long list of people who disagree with that, but not me - I liked myself.  I liked who I was and what my body could do.  I felt strong.  I felt capable.  Now those feelings are dying off.  I am resilient and will overcome this - yatta yatta yatta - but this die off wasn't a choice.  This is the opposite.  This disease takes something good and makes it bad.

There are pictures going around of all the people in Boston who helped in a time of great fear and tragedy.  The women of WOZA filed a petition asking not to be beaten when peacefully protesting.  A lesbian woman in South Africa was beaten, raped, and murder for no other reason than who she is attracted to.  There is a lot of bad out there.  A lot of bad.  These people are why I fight.  These people are dedicated to making this place better, even when things are horrible.

So before I self-administer a 3 inch needle into my butt cheek - I will think of these people.  Die off is horrible, but perspective is helpful.  Especially on days like today.

Acceptance

Right around a month into my treatment I started dry heaving, which is the universes way of reminding you that it is in control.  On that day I sunk into the bathroom floor sweating and crying from pain in between dry heaving only to get up to give myself shots in my stomach, thigh, and ass.  The next day I finally realized I needed to address pain management.

Today the chest pains began.  I was worried, but I knew it wasn't a heart attack.  This is what I am basing that statement on:
In grad school there was a lecture concerning women and heart disease.  The speaker asked the class the number one reason women don't go to the hospital when having a heart attack.  A guy in my class raised his hand and said, 'because the women aren't wearing makeup.'  Yes, the guy who said that, was the guy I was dating.  Thanks for asking.  Anyways, that speaker also talked about how women experience heart attacks differently from men, aka not chest pains (more back and neck pain).

My doctor agreed with me.  Not on my reasoning, but that it doesn't sound like a heart problem.  Instead I have inflamed cartilage on my chest wall.  This week at work is really difficult.  Yes, I can accept that I am sick, but I can't accept leaving work with out a plan - compromise.  So I am still working for 2 weeks before going home.

This week I am teaching and the students don't know I am as sick as I am.  I have worked since I was 15.  I love working.  I believe in what I do and I want to do the best damn job I can, and it pains me to realize I can't do that anymore.  I know its not forever, and I know my students will go on with out me.  But I wanted to walk with them.  I don't like feeling like I haven't contributed anything to society.

Acceptance is challenging.

So I Have Lyme Disease

I had just finished grad school so I expected that my body would crash and revolt.  I figured that after two years of over exertion it needed a rest.  The rest very quickly turned into severe headaches which very quickly turned into my face and tongue going numb.  Hi ho hi ho to the ER I go.  The doctor said, 'I think your either pregnant, have leukemia  or lyme disease.'  I threw my hands up in the air and shouted lyme disease.  Hey, judge all you want but you don't know who I had just broken up with.

2 weeks of antibiotics later I thought I was better, and went back to biking 10miles a day, working a full-time stressful job, and being a regular at the gym.

6 months later I crashed my bike and began 'falling'.  It took me two weeks to realize that the lyme was back.  I did my research this time.  Learned about the lyme controversy and how insurance companies have managed to pay off doctors and researchers so they don't have to cover lyme disease.  There still isn't a 100% accurate test for lyme disease nor is the a standard treatment plan beyond a 3 week dose of antibiotics.  Which judging by the paralysis in my face - that treatment plan clearly worked.

I found a Lyme Specialists and began hemorrhaging money.  He told me that I had Advance Lyme Disease, and it had begun affecting/targeting my adrenal gland, thyroid, and possibly my neurological system.  This would mean 6-9 months of treatment.  So my mom flew out to sit with me as I began giving myself shots in my stomach, thighs, and ass and popped 12 other pills a day.  This is called the 'Die Off' - where I self-administer drugs to kill the lymes.

I teach 18-24 year olds so not exactly a stress-free behind a desk job.  The doc said I could try to keep working and so of course I did.  I would teach in the morning and then race back to my couch to fall apart.

A month into 'Die-Off' my doctor called and said he had updated labs.  I sat in his office and tried to hold back the full fledge snot ridden sobbing as he told me I was getting worse.  My intestine and liver were now showing sensitivity and elevated levels.  Then he dealt the biggest blow: I have to quit working, and go stay with my parents.

As I got in my car to drive home I got lost.  I drove and drove and got more lost and more lost.  The panic, fear, and tears came very quick.  Not of going to stay with my parents, but rather what having to stay with my parents meant.  It meant I was sick, and really sick.

So today - 10 months after the first doctor told me I have Lyme Disease I am finally ready to accept the fact that I am sick.  I am mastering the steps: denial, acceptance, and now it is time to move onto kicking ass...well as soon as my mommy comes and flys me home. What better way to celebrate your birthday than signing disability paper work and moving back in with your parents?