Velvet Verbosity

Other than the approximately seven days when the antibiotic worked, I was sick in a way that was hard to explain to anyone, and even harder for me to understand or make sense of.  Most of my symptoms changed daily, even hourly.  The only common threads were a slightly sore throat, sometimes a headache, a debilitating weakness, and those fevers that would come and go rapidly.  The rest of my symptoms varied.  Sometimes I felt pain in my muscles, especially on the right side of my body.  During those times, the smallest activity could leave me sore for hours.  Plucking my eyebrows would result in hours of shoulder muscle pain.  Walking from a building to my car would leave my legs sore.  Talking on the phone was even too taxing for my oddly weakened body.

I started getting sick again while I was still on the antibiotic, so I had to go back to the hospital clinic.  The doctor I saw that day refused to consider that my relapse was the same thing.   I had pain in my abdominal organs that day, so he decided I must have a urinary tract infection, even though I had just finished a two week course of antibiotics.  So I peed in a cup, had my arm poked for blood samples, and listened to a doctor tell me absurd things like how my fevers and muscle weakness that made it difficult to move around MUST be a urinary tract infection.

The UTI test came back negative, as did the test for Lyme, but I was still sick and getting more sick.  For the next week I would spend almost every waking moment that I had any energy researching what could be the cause of my strange illness.  I called doctors, specialists, researched tick-borne related illnesses, auto-immune illnesses, ran my symptoms through symptom checker websites, until I was spent for the day.  I learned some stuff I never knew.  The test for Lyme is often negative, in fact it’s negative in over 60% of actual Lyme disease cases.  I also learned that the AG of Connecticut opened an investigation into the governing body of infectious disease because they seemed to be ignoring peer reviewed research in establishing the diagnostic and treatment protocols for Lyme.

Then I got in to see another doctor who said she would be willing to run more tests.  I had my arm poked some more, I described the strange array of symptoms, and the doctor prescribed me another round of the same exact antibiotic for the same period of time.

Now, I’m not a doctor, but I know enough to know that if an antibiotic doesn’t work the first time around on something, it sure as hell isn’t going to work the second time around.  I tried to persuade her to give me a different antibiotic or a higher dose, or a longer period of time.  She was, as most doctors are, good at making me feel like I couldn’t possibly have a clue what I was talking about, and she practically patted me on the head as she shooed me out the door.

All my bloodwork came back “normal”.  No Lupus, no Rheumatoid Arthritis, no Rocky Mountain Spotted Fever, no Lyme, no anything.  I was three days into the antibiotic and STILL sick, and had developed a new symptom.  The feeling that a tight band was wrapped around my lower ribs squeezing ever tighter and tighter.  I would later figure out this symptom was a severe side effect of Doxycycline and landed myself in the ER again where I was told two different things about the cause (and the following day told still two more different things by a pharmacist and the doc I had seen in Boston).   I had no choice but to go off the antibiotic.   Within a few days my breathing was back to normal, and then I promptly caught a cold - germs I probably picked up during all my ER and doctor visits, but the weakness and fevers were gone.

So far I’ve still not had a return of the odd symptoms - oh, except for that heart arrythmia that showed up a few days ago…

With love,

The saga is long and, including last night, I have racked up 5 ER visits in a month.  That has to be some kind of record.  The good news is that I think I’m finally getting better.  I will be back with a bona fide update by the weekend.  I have lots of stories to tell and I’ve missed you all!

I am still too sick or weak to write much.  I saw another doctor yesterday who is putting me on another round of the same antibiotic, and to be honest, given my response to it on the first round, I’m not happy with this treatment protocol.  Battling the medical system when you already feel terrible is something no one should have to go through.  When I feel better I will post more.

No doubt, this has been one tough year.  Three weeks ago I was bitten by a tick and three days later came down with symptoms in line with Lyme disease.  I was very sick, and the doctor put me on antibiotics.  Unfortunately, I am still sick.  I had a period of feeling better, but was scant on here because I was so busy catching up on all the things that got dropped when I was sick.  I had to go to the ER today and they refused to give me more antibiotics, so I am still very symptomatic.  I can only concentrate on anything for a half hour at a time, and I am extremely fatigued.  A level of fatigue that is impossible to understand without experiencing it.    I expect to be in bed a lot until I get a proper diagnosis, or until this “non” lyme thing goes away.  I will post as I can, and hope to put up the most recent round up soon.

Dear readers, you have been so good sticking with me through all the various gaps.  There’s nothing I can say except that when the going gets tough, the blog seems to be the first thing I have to drop.  On top of it all, my job is in jeapordy because of the economy, so that’s fun added to the madness!

Sigh.

We hit a pothole on the road to recovery.  I’m changing the tire and will be back with 100 words very soon.  If not tonight, tomorrow.  Hang tight internet.

On a lighter note.  The “precious” and addiction.

Watching The Two Towers, and being a codependent, I couldn’t help but see the analogy between the one ring and addiction.  In this part of the movie, Sam and Frodo discover Gollum is following them, but Frodo takes pity on the creature and they Gollum on as their guide to Mordor.  As they trek toward Mordor, Sam does little to hide his disdain for Gollum and constantly derides him and calls him foul names.

Frodo: Why do you do that?

Sam: What?

Frodo: Call him names.  Run him down all the time.

Sam: Because, because that’s what he is Mr. Frodo.  There’s naught left in him but lies and deceit.  It’s the ring he wants.  It’s all he cares about.

Frodo: You have no idea what it did to him.  What it’s still doing to him.  I want to help him Sam.

Sam: Why?

Frodo: Because I have to believe he can come back.

Sam:  You can’t save him Mr. Frodo.

Frodo: (turning on Sam viciously) What do you know about it??  NOTHING!

(Sam walks away.)

Frodo:  I’m sorry Sam, I don’t know why I said that.

(Sam turns)

Sam: I do.  It’s the ring.  You can’t take your eyes off it.  I’ve seen it.  You don’t eat.  You barely sleep.  It’s taken a hold of you.  You have to FIGHT it.
Frodo:  I know what I have to do Sam.  The ring was entrusted to me.  It’s MY task.  MINE.  MY OWN.

Sam:  Can’t you hear yourself?  Don’t you know what you sound like?

(Later, Gollum fights the addict within)

Must have the precious.  They stole it from us.  Sneaky little hobbits.  Wicked, false.

No, not master.

Yes, precious.  First they will cheat you, hurt you, lie.

Master’s my friend

You don’t have any friends.  Nobody likes you.

I’m not listening, not listening.

You’re a liar and a thief. 

Go away.  I hate you.  I hate you.

Where would you be without me?  I saved us.  It was me.  We survived because of me. 

Not anymore.

What did you say?

Master looks after us now.  We don’t need you.

What?

Leave now and never. Come. Back.

NO

Leave now and never come back.  Leave now and never come back.

(Suddenly Gollum/Smiegel starts jumping for joy.)

We told him to go away and away he goes.  Gone, gone, gone, smiegel is freeeee!

Two weeks ago, about two hours later than now, I received the phone call no parent wants to receive.  Some would say I co-created that reality through my incessant worry that I would receive that phone call one day and it would be about my son.   He has been on an addictive self-destructive path that has been increasing in intensity.   The story is so long, so full of sorrow, desperation, anxiety, worry, love and anger.  Last year, after several years of an ever tightening battle, I found a treatment for EK (I sometimes refer to him as Evil Knievel, but I don’t want to keep typing that because then I get traffic to my blog that should never find its way here) that worked.  Neurofeedback.  It worked to quiet his brain in places where things were on fire and causing him to feel and act crazy and self-destructive.  After a month, I felt myself exhale.  It was really working, and things weren’t perfect, but they were so much better.  We all felt life was more manageable again.

Then my insurance denied me.  I was making too much money, but not enough to buy my own.  I had to reapply, and in that window of insurancelessness, our neurofeedback provider and awesome therapist filled up her schedule book and wouldn’t be able to get EK in for months.  She was good, and word got around (partly thanks to me).  I searched around for a new provider, but most wouldn’t work with teenagers, and the rest either didn’t take insurance or were full.

Things started ramping up with EK, and we all felt it.  A month and a half ago, I was just getting ready to put my head to my pillow when EK walked in to my room and said, “Mom, I need to get back into treatment or be on meds or something.  I’m starting to not feel well again.  I feel like I’m slipping back to where I was before.”    The room was dark, lit only by the hall light, but I could see the tension in his face.   It was a look I knew all too well.  The look of my son struggling with an inner chaos that he didn’t know how to right, how to control, how to stop.  I was scared for him, and I knew if I didn’t find someone soon that things were going to get really out of control again and there wouldn’t be anything I could do to stop it or help it.  I told him I would make another round of calls the next day, first thing.

I spent the next several days calling every provider.  Every one told me the same thing I had heard before.  They were full, didn’t work with teenagers, didn’t take my insurance.  But each time I was given another number, and eventually that chain of numbers led to The Meek One.   The Meek One was a long time therapist but new to neurofeedback.  She was connected to Mother Hen (our previous provider), and was training under the area’s foremost expert in the field.  She could get the protocols from Mother Hen and would not only take EK, but she would provide intensive treatment (three times a week) for free.

It was a miracle.  But with all the set up, the conversations, the equipment not working right and her being too green to know how to correct it, time ran out.   EK self-destructed.  A series of unfortunate events, rising tensions in the house, a fight with a stranger, and feeling like a simple legal case was going to come down hard on him, he got himself good and worked up.  For legal reasons I can’t disclose details.  What I can tell you is that he is lucky to be alive and through his pain, and his fear, he asked to go into inpatient treatment.  His assessment was yesterday and we are keeping our fingers crossed that he will get in and that it will help.  I’m worried.  Worried that after seven years of trying everything that this might be yet another patch that doesn’t hold him together and might make him worse.  Worried that really the neurofeedback is the only thing that really works, and he won’t be able to get it while he’s “in”.  Unfortunately, things have reached such a crescendo that those decisions are now out of my hands.  Out of my wringing worried hands.

Internet, VV will be down for an indefinite amount of time.

Ok, I need to know. Are there any Dexter fans in the house?

With love,

I couldn’t have said it better myself. In fact, I’ve never been able to articulate this as eloquently.

With love,