Surgery #2: Lyme disease being your own doctor

Double IVing it in the ER

These below picture isn't for the faint of heart.  So I have been told.

Do people with other diseases feel as if they are their own doctor?  Making all pertinent medical decisions on their own.  You solicit opinions and research.  But at the end of the day you are the one making the call.  You are the one watching symptoms and patterns.  You look around for doctors that will do what you want them to do.  In the past 48 hours I have sent myself to the ER, pulled out a PICC, ordered a new PICC, and changed PICC locations.

After a stressful 3 hours of misinformation, what I like to refer to at lies at this point, I was told to come to the hospital in an hour for surgery.  So I did what anyone with 2 free arms would do.  Walked down the street and picked up my niece and nephew.  My niece of course had none of it.  Yesterday she cried when I wouldn't pick her up.  Today she demanded to be put down.  Point, Universe.

Van Morrison and I arrived at the hospital to a warm reception.  Lets just say all of the nurses remembered me and my frugal ways.  Upon my arrival they told me the doctor wanted to do a Tunnel PICC Line.  I asked for pros and cons.  What it came down to was a red silk dress.  I can now wear it to a wedding since my arm will be sans lines.

They did say the risk of infection was lower.  However, they said it in a way that not even a child would believe.  The doctor, who talked to me all of 1 minute, said this would save the veins in my arm for later in life.  In that same minute he also asked me if I wanted anesthesia.  I asked about the procedure and he said he would be able to do it sans anesthesia.  Damn challenges mixed with frugality - my one true kryptonite.

An hour later of feeling as if someone was stabbing my neck.  I am now left with this.  But I no longer have lines coming out of my arm.  And now I can give myself my own meds in a pinch.  Independence, what?

The preliminary blood cultures came back showing no growth.  However, if I never wanted to date again I would post a picture of my exposed PICC site.  Granted I'm not a doctor, not that a doctor has spent time looking at the site, but I'm gonna say that it shouldn't look as it does.

I hate being my own doctor.  I really wish I had a local doctor to call who could spend more than a minute talking to me about surgery.  Good thing I think so highly of myself.  I'll add this to my resume: CEO, Healy Lyme Disease Prevention.

Take a deep breath and hold it.

The nurse stretched my arm out on a table.  Told me to take a deep breath and hold it.  I jerked my face away a locked my eyes shut.  He slowly pulled the PICC line out of my arm.  No meds.  Now warning.  No explanation.  My PICC line was gone.  The one thing that has shown any signs of improving this disease was gone.

My mom spent all day Sunday in the ER with me.  It was a horrible experience.  Improper procedure. A complete lack of communication among hospital staff.  It seemed as if no one there knew what they should be doing.

I noticed pain in my PICC Thursday.  I kept a close eye on it.  By Saturday the redness began to look yellow.  I was advised to change the dressing again.  There was a pocket of grossness.  If in 12 hours the site was gross again then it was time for the ER.  The ER is simply a hot bed for infection so I was hesitant to go.  But that was my only option.

My health is constantly being compromised because I contracted a disease that medical professionals are legally allowed to shun me for.  

I wouldn't go to the ER if I had a doctor that would see me.  Especially since the ER doctor spent all of 30 seconds looking at my arm and never asked me a single question.  The only doctor that will see me is 11 hours away.  The CDC acknowledged Lyme is more prevalent.  However, the CDC hasn't made it safe for or mandate that doctors to treat me.  So I am left waiting in the ER for 5 hours.  To have a nurse who openly acknowledges he has never removed a PICC line, pull my line out with no supervision.

If only you knew how many times I looked at my mom and said, 'If I die please destroy this place'.

I now feel like I am racing against time.  The ER said preliminary results would be in this morning.  Radiology says they won't.  The ER left a temporary IV in my  arm with no removal plan.  Some people just want to get married.  Some people just want a family.  Some people just want a good job.  All I want is a PICC line.  To a point of tears.  I desperately need a way to keep getting the only medicine that provides hope I can be 'me' again.

CDC starting a Lyme news trend

Lyme is totally trending this week.  It was all over the national news thanks to a report the CDC released.  Let's not get crazy here and think the CDC finally admitted everything they are doing wrong.  But here is what they did admit to: 300,000 people are affected by Lyme each year.  Last year they claimed only 30,000 people were affected.  That's almost the same.

This admission has led to many articles as well.  One in particular in Boston I thought was well done.  The thing to keep in mind is that we are so far behind on Lyme disease. After 30+ years the CDC is only now acknowledging how many people are affected.  There isn't a reliable or accurate diagnostic test.  There isn't a standard treatment course.  There is no acknowledgement that chronic Lyme exists.  There is no test to show when someone is cured/in remission from Lyme.

No hitter and all that, but I know when I am getting a bit better.  I get my advocacy on.  This week when I had a few good days - holla!  I got to work.  There is an organization out there doing great things for Lyme: Tick-Borne Disease Alliance.  As the name implies it is 24/7 party.  Lyme disease is a controversial wench.  This group is starting at square one and I like that.  I mean I would prefer to take over the world and tell everyone what to do, but that hasn't happened.

So here you have it.  Tick-Borne Disease Alliance has a campaign where you: print off one of these cool signs, selfie, upload, and they are taking it to the hill.  The goal is to get funding to develop a diagnostic test for Lyme.  So selfie up folks!

I have also submitted the below op-ed to my local paper.  Thanks to Hillary for proofing my Lyme brain work! If you read this and have pull or know someone at a local paper feel free to share.  Sharing is caring.

"Every 29 year old’s birthday wish: signing disability papers, leaving a successful career, and moving in with her parents.  The culprit? A tick the size of a sesame seed, also known as Lyme disease.  The CDC recently acknowledged they have been historically underestimating the number of people affected by Lyme.  This gross neglect has left thousands of people battling a disease without answers.  Doctors rely on diagnostic testing and sign of a bulls-eye rash, neither of which are reliable, leaving a high rate undiagnosed and numerous untreated individuals.  We need an accurate and reliable diagnostic test."

No excuses

A Tuesday treat demonstrating how to use my new PICC line shower cover.  Also, known as an arm condom. They are absolutely not allowed to get wet.  Thats what she said.

Enjoy!

I didn't buy shoes because I didn't want one of them to drop.

Forget antibiotics apparently all I needed was a theme song, my swag, and some shopping.  I should have known.

Saturday, was crazy.  I had motivation.  I had the desire to do something.  My headache was gone.  The muscle pain had diminished.  I put on a little bohemian dress that covered my PICC line.  I wore baby heels.  And my mom drove me to the cutest little town.  We browsed antique and vintage stores for 2 hours!

Granted I had to sit down several times for a rest, but no one knew I was sick.  I was just like everyone else enjoying their Saturday.

That same day I went to see The Butler. Saturday was the first day since April that I have been able to complete two activities in one day.


I figured that on Sunday I would crash.  I didn't.  I was able to go to brunch with my cousin.  Then sit for all of family dinner with out having to leave to lay down.

You don't talk about the possibility of a no hitter.  You think it but under no circumstances do you talk about it.  I am thinking a lot of things right now.  What I will talk about is this: I am eating everything in sight.  Type 2 diabetes style.  I haven't been without nausea since February.  Amazing how much I can eat when I'm not nauseous all day.  Yesterday I enjoyed food.  A few more days of this and my sick pants will finally be too tight and I can graduate back into normal pants!

Katy Perry, helping to cure Lyme Disease

I've got the eye of the tiger...well in this case a Bengal.  Who Dey.  Roar.

Today I will dance through the fire because I finally slept through the night!  It took 5 pillows, 2 sleeping pills, and 3 pain pills, but girlfriend slept from 10:15pm to 9am!

I have made a friend who also has Lyme.  He told me he walks 2-3 miles a day.  Instantly I felt lazy. Challenge accepted. Its one thing when people sans Lyme work out - I can accept I can't do that.  But oh no....I can't be showed up by someone with my same disease :)

Yesterday I played my new theme song about 5 times.  Since that is how long it takes me to get clothes and shoes on.  Roar.  Then I strutted to that post office.  It wasn't 2 miles.  But it was the first time I was able to walk in 2 weeks.  I had to lay in bed the rest of the day, but it embodies my first few struts towards wellness.  And I'm going to go walk again right now.  #Olympics

Surgery is the root cause of sluttiness

As a woman approaching 30 the time had come to clear my wardrobe of items that are no long age appropriate.  Dresses that zip up the front, for example.

But no.  Surgery has made those items extremely necessary.  Rush Limbaugh I am talking to you.  It's not birth control causing women to be sluts it is surgery.

I am unable to lift my arm above my shoulder with out crying in pain.  It is very hard to get a shirt on with this limitation.  Welcome back to my wardrobe strapless dresses!

I may have a line coming out of my arm but there is no need for a tacky pole holding up my antibiotics.  I decided to use an infinity scarf!  Mobile yet fashionable antibiotics.

If it doesn't zip or button up.  If it isn't strapless.  Then you probably won't see me in it for a while.

For those of you that read this and don't know that I am sarcastic.  I am sarcastic.  Women get to wear what ever the hell they want.  Respect.

In other news.  I may be the luckiest person alive.  I am not able to safely drive yet.  Yesterday I had to go to SSDI to sign paperwork applying for disability.  I couldn't do this online because my mom and I have the same name.  Apparently, the social security office can't tell us apart.  I mean we only have different social security numbers and birth dates.  So hard.

My mom had to drive me to the office.  We weren't even a mile away when a woman pulled out right into our car.  For someone that has heart palpitations, chest pains, and anxiety from their disease this incident was awesome.  Everyone was fine.

If you want to come visit me and just be around me hoping that some of my luck will rub off on you I totally welcome you.

Aunt Sadie, Here is your card. Liam

Direct.  There was no ambiguity with this beautiful card.  

My SIL did the top one.  She's getting pretty
damn good with those water colors!

My grandfather died the day before I was born and my other grandfather about a year or so later.  I was always told how I helped them with their illness.  Listen, it wasn't because I was cute.  Real talk I was bald and fat until I was 2.  I looked like one of those babies who ate their twin in utero.  But apparently I had my smile and laughter back then.  Up until yesterday this had just been a sweet story that my grandmas told me.  

Revolt.  There is nothing non-violent about what my body is currently doing post surgery.  I just got 3 new meds from the pharmacy to help control this mess. This had to stop, at the very least mentally.  It is necessary to prevent getting lost in the sadness of it all, ie the never ending pain and lack of answers or solutions.  

My brothers and their wives love to pro-create.  Their little ones single handedly pulled my ass out of bed and put a smile on my face yesterday.  I walked one block down the street to see my SIL and the kids.  As I hobbled into the door my niece's face lit up and she screamed my name.  Yesterday, I finally understood what my grandma had told me so many years ago.  Their little faces lighting up, smiling, and charging at me when I walk in the door makes Lyme disease melt away.  Beautiful cards in the mail.  Hugs, kisses, rainbows, sunshine, unicorns.  I am biased, but they are the cutest lil ones out there.  Intelligent, sassy, and full of endless potential.

That was beautiful wasn't it?  Here is the rest of the truth.  My aunt and uncle are in town from Montana!  My mom invited my other brother and his 3 kids to come into town for the weekend to visit.  Yes, that would be the same weekend I had surgery.  No, you can't come.  Lyme disease may melt away.  But ya know what brings that bitch back?  Loud noises.  Do you know who is loud?  Children. 

One day hopefully sooner than later - I will be better.  On that day I will scream and dance and wrestle and hold and toss them in the air again.  And later on I will tell them how their lil love helped me through a yucky time.  All while hoping they never gain a full understanding of what crazy aunt Sadie means.  

 

Is that a PICC line or are you just happy to see me?

If only you knew how long I have been waiting for that post title!

As soon as the nurse came to prep me I launched into my insurance questions.  Thankfully, I dug deep for my wit and it paid off.  They laughed as I applied my own numbing cream. Quizzically wondering what else I had in my self-medication tool-kit, aka purse.  Other nurses wanted in on the fun.  One offered me a warm blanket then laughed hysterically as I said no thanks.  She walked away then immediately ran back and covered my shaking toes with the blanket saying it was free.

Remembering they had a job to do a nurse asked me if I am pregnant. I just laugh. She asked me again if I am sure.  I look deep into her eyes with all of the seriousness I could muster and asked her if you still have to have sex to get pregnant.  She blankly stares at me and says yes.  Well, then I'm not pregnant.   See picture left.
 
The laughter was helpful since there was a brief moment of panic.  I went into this thinking they would just put me in a lil room and slice open my arm - bada bing bada boom.  Nope I was rolled into a room straight off of Greys Anatomy.  I was hooked up to numerous machines and there were bright lights and lots of beeping.  My surgeon wasn't McDreamy but he earned a dreamy place in my heart.

The surgeon came in and the nurse told him I didn't want any pain meds.  He comes over to ask me why the hell not.  I give him the run down of lyme and insurance.  He leaves.  Meanwhile not a single nurse knew the cost of anything in the room.  There were two options for saline.  No one knew which was cheaper.  I told them, 'no problem, I brought my own!'  They didn't go for that.....

The surgeon comes back and gives me a shot to numb my arm, and says 'This is on the house.'  Shit I feel good about myself if I get a complimentary diet Coke, but pain meds?!  Guess who got her groove back?

The first 24 hours post surgery I was in constant pain and couldn't sleep.  So I was super pleasant to be around.  Each day has gotten slightly better, which is fantastic but the learning curve is steep.  Learning how to deal with the PICC line is compounded with the new symptoms/side effects of the IV antibiotics.  I started my first round of IV antibiotics about 3 hours after surgery and am hooked up to the IV for about 2 hours each day.

I would cross my fingers but arthritis is a bitch.  So I shall close my eyes and be hopeful.  Here we go!

Hospital Bound

Armed with all of my self-medication leftovers.  Cheers to this being the beginning of the end of Lyme!

"We don't have to tell you if it is covered until after you have the surgery since it is an outpatient procedure."

Behold the flow of doctors:
 Doctor in NYC -> General doc in Ohio -> Surgeon -> Radiologist.

Yesterday was a cluster fuck.  I know I am out of shape and not looking my finest but there isn't a doctor in the state of Ohio that wants to touch me.  The surgeon said I needed a port instead of picc line, but the doc in NYC only wants the picc line.  Let the problems begin.

PICC lines are beneath the surgeon so she said I had to go to the radiology department.  They refused me.  Said surgeon then pulled rank over someone.  Tomorrow at 10am someone who was anti-operating on me is going to cut into my arm and put a tube to my heat.

I am afraid to piss a waitress off on the off chance she will mess with my food.  You can imagine my fear now that this surgeon is annoyed already.

I wasn't upset yesterday that things keep changing.  Rather, I was pissed off that I just spent $700 on IV meds that expire in 14 days.  If these people delay my surgery I loose out on that money.  What can I say I am materialistic.  Thankfully the shit just got scheduled.  10am tomorrow.

Next cluster fuck: Insurance isn't going to tell me shit.  Their exact response: "We don't have to tell you if it is covered until after you have the surgery since it is an outpatient procedure."  They have been so ridiculous the hospital and surgeons office have called on my behalf to look for answers.  The base cost just for me to be in the room tomorrow is $2,000.  That doesn't include the surgeon or anesthesia.

The hospital also said that they can't tell me the exact amount since it all depends on the choices the surgeon makes.  Fuck that.  I may forgo anesthesia and self-medicating simply to assist the surgeon in making the least expensive choice every time.  Bringing the thrift store to the hospital.  Rep.  That hospital gown costs $20?  Nah I'll just lie naked on the table.  What's the next thing you are charging me for?

Lyme disease: the only new things are new lows. And other uplifting Monday thoughts.

One of the first things my doctor told me to do was keep a daily record of symptoms.  My entry on Saturday simply said, 'Worst day of all time.'

Normally, mornings are the roughest and I get a moment or two of reprieve in the evening.  And by reprieve I mean that I can get out of bed and manage to mask the pain.  Then Saturday came along.  Previously the worst day was one spent dry heaving, crying alone, and passing out and hitting my head and going to the ER.  Saturday bitch slapped that pansy ass day.

I'm really good at faking it.  Just what all of my ex-boyfriends wanted to read.  I kid I kid.  At first I communicated how sick I felt and how much pain I was in to my friends and family.  But that constant communication had to stop.  The pain is and was everyday and although I have an illness attacking my brain I still had enough sense to realize that I can't complain everyday.  Boring.

Chronic illness means your going to have to find a way to deal with the pain and not let it ruin your relationships.  I think I have been good about balancing being honest and not being debbie downer.  This Saturday there was no faking it.  Lyme disease won on Saturday.  The nausea flooded over me Friday night and has yet to leave.  I haven't been able to eat a real meal yet.  The full body pain left me in bed all day.  No light.  No noise.  Constant unrelenting headaches.  Unable to stand without everything going black and having to grab onto something to not fall down.

Despite taking 2 sleeping pills and 2 pain pills before bed I am still struggling to fall and stay asleep.  So I ate chocolate cake.  With frosting.  And ice cream.  Self-medicating advocate.

I've had first dates that were more physical than this physical

Yesterday I went in for my pre-op physical to ensure I am able to have surgery next week.  The doctor took my pulse, blood pressure, and listened to my heart.  Strangers on public transportation during rush hour were more thorough.

She spent the rest of the hour telling me how confused she is by the lectures on Lyme.  Didn't you go to school for 8 years to not be confused?  She meant well.  It was nice that she looked into Lyme.  I appreciate that effort I am sure she billed insurance for.  But then again - that is her job.  Her job is to figure out what the hell is wrong with me.  Endless possibilities I know.

When attempting to understand a disease why is she reading lectures?  Call me crazy, but I would read some studies.  Crazy.  Also, where did you go to school that reading a lecture is too confusing for you?  I have a disease ravaging my brain and I can still make it through a study.

As someone who has trouble recalling words, let me help you out doc.  The word you were looking for was: conflicting.  You read conflicting accounts of Lyme disease.  Is chronic Lyme real or is it not?  To be or not to be.  That is the question.

From previous doctor appointments I knew where this was headed.  She was about to break up with me.  I cut her off and reminded her that I have had every test in the book.  I have had countless vials of blood drawn.  I played her game.  I saw specialists.  Yet after all of that the only thing I have tested positive for is Lyme.  Like a man she smelled my desperation.  She broke up with me.

After the PICC line is inserted on the 9th she will no longer see me as a patient.  She gave me the 'Its not you its me', which in the medical field is, 'I can't see you due to legal ramifications and insurance',