A Shot In The Dark, So To Speak.

So.

My stomach is trashed.  Each morning when I gobble down my pile of vitamins, herbal supplements, thyroid enhancers, mood elevators, and antibiotics, I get this raging sour stomach that lasts for about an hour, sometimes up to 3.  It feels like a cross between nausea, hunger and cramps.

It has gotten worse, the harsher my antibiotics have gotten.

So Dr. Lyme wanted to get one more round of oral abx in me before upping the ante. I just finished up, and it's on to Bicillin injections.  Twice a week.  Via a needle.  Into my ass.  To top it off, there was discussion about "doing them at home".

Wha?

Yep.  Seems people like to take their drugs home, and jam needles into their own asses.  Or, they allow a loved one to do it for them.

Sky King?  Not a fan of needles.  Gets fully creeped out.  FULLY.  So, he was not at the top of my list.  Instead, one of my sister-in-laws had volunteered.  But I really wanted a back-up.  So, I of course went where I usually go for support: Facebook.

Me:  Good news--no more oral antibiotics to trash my stomach!

Bad news--they want to shoot them in my butt, instead.

Any nurse-types wanna come hang out twice a week? I will feed you, and show you my butt!

(And THIS is what I was treated to...)

• Rotten Friend #1---Anal
• Rotten Friend #2---Is it safe to say it won't be the first time?
• Rotten Friend #3---Aimee, I love your sense of humor. Thanks for tee'ing that one up for us.
• Rotten Brother---Eewww my sister needs anal twice a week lol
• Me---For once, I was serious :::smh:::
• Me---Thank you all, most supportive people of FB. Wow. Sky King has agreed to take his aggression out on me, and will be learning how to torture me next week
• Rotten Friend #3 (again)---Just make sure he pokes you parallel to the direction he's poking you. 

  So.  Sky King agreed to go and learn how to do the shots--we had spent some time online looking into techniques (the bicillin is thick, so a larger gauge needle is required. Also, the medicine goes into the muscle of the buttocks, and can make the area sore for a while).  He is typically needle-shy----can't stand to see needles going into skin, so it was kind of a big deal when he said he would do the shots for me.
  
  When we go in, we are armed with so much knowledge that Sky King is visibly nervous, and I am anticipating a painfully horrible experience.  I check in, and ask what the cost is to get the today's injection done there, with Sky King as a learning witness.  The cost?  $6. 
  
  Sky King hears this, whips out his handy-dandy smartphone calculator.  
  
  "23 weeks, 2 shots per week, that's 12 times 23, for a total of $276.  Done.  I will be the driver."
  
  You see, the shots are $70 per shot.  Plus $6 injection fee.  Sky King?  Totally down for the $6 extra per shot.  He barely made it through the tutorial, watching a three inch needle getting jammed to the hilt into the fleshy part of my upper hip.  So he figures, if $700 a month doesn't break us, $60 more per month to have the whole thing done by a professional is the least of his concerns.  
  
  But why shots? 
  
  Well, as I said before, the stomach is torn to shreds.  Also, my neuro symptoms are still pretty bad.  There seems to be a small amount of progress, but the shots get into the system better, they have a much higher absorption rate.  And so Dr. Lyme feels the neuro stuff will improve quicker, with the higher concentrations being in me all the time, without me being all passive-aggressive and refusing my meds when my stomach hurts. So, even though my energy is leaps and bounds better than it was, I still have a long road to getting my neurological stuff sorted out.  
  
  So, shots.  Twice a week.  Hopefully, less side effects.  :::crossing fingers:::
  
  Meanwhile, I have been enjoying a more normal existence, and haven't been blogging as much. Also, I have been working on being more positive and eliminating things that stress me out.  Turns out, ranting about other people being assholes is less stress-reducing than one would think. Which means I have less funnies to share.  
  
  I hope to work out a better life balance soon.
  
  Peace.

Doctor Feelgood

We went to see Dr. Lyme, Sky King and I.  We had our usual gear---water bottle, purse, gigantic checkbook, notebook and file filled with lab tests, diagnoses, etc.

As we sat, I overheard the stuff I usually do----phones ringing, people answering, magazine pages flipping.

And as usual, I heard people on the phone telling callers that "he has a few callers waiting, and his 9 o'clock is already here".  That's me.  I'm the 9 o'clock.

At nine oh five, I was still patiently wait my turn, perusing back issues of Dwell and Outdoor Living and Treehuggers United or some such drivel.  And, I like the wait. Not just because I find amazing uses for empty watering cans and recipes for the "best pork rib marinade".

Why?

Because Dr. Lyme spends each morning, from 8 to 9, taking calls.  From patients, from potential patients, from people that have heard what he does, who he treats.

And sometimes, that caller is me.  I call in, and wait.  When he picks up, he has my file, and he is thoughtful.  He is patient, and answers my questions, encouraging me to call with any other questions or concerns.  Who does that? Dr. Lyme does.

But maybe you are wondering why I don't sing his praises out loud---let everyone know there's a guy out there that helps people like me.  And, maybe there's more-maybe there's one for you, or your friend, or your loved one.

Because LLMDs (Lyme Literate Medical Doctors) have to be on the down-low.  They have to keep their practices safe from insurance companies that wish to discredit Chronic Lyme Disease, and the treatments we receive.  The treatments that help to make us well.  Or at least better.

There is an organization, ILADS.org, to get information about Lyme Disease.  You can email them for a doctor near you, that will treat you.  But you can't see a list, or scroll through a ton of options.  Many doctors won't treat me.  Or, they will, but they will treat me for pain.  Or for depression.  And if I had Lyme Disease, I am done with treatment, because the longest approved treatment, according to the IDSA, is 28 days of antibiotics.  That shit happened, oh, 7 months ago.  I guess I was cured then, but it just takes a while to catch up?

So anyway---I have this amazing doctor who spends too much time with me.  Then, he gives me the medications he sees fit, based on MY situation.  MY symptoms, MY results, MY reactions.  Which is why I see him so often, and call between visits.  And for this, I fork over enough money to send my entire family on a whirlwind European vacation.  Instead, they get to open doors and jars and water bottles for me, and secretly wonder if I will get well, or if this nasty disease will kill me.  I tell them it won't, that I am on the mend, that I will never be as bad as some of my friends online, the ones with the seizures, the ones that are bed-bound.  I tell them we caught it early enough (because after 27 years is when it gets really bad, I suppose...). 

And all along, I hope I didn't pass it to any of them, through birthing them, loving them.

Sick Of Sick, Part I

Dr. Lyme and I had a pow-wow the other day.

He's unimpressed with me lately.

Dr. Lyme: How have you been feeling?
Me: Not great. I've turned serial apathetic
(I didn't really say that.  What I DID say is that I am blah, don't want to be awake OR asleep, don't want to participate in stuff, want to nap all day, can barely muster the strength and desire to overeat desserts, etc etc etc)
Dr. Lyme: Ah.  When did that start?
Me: About 3 weeks ago.
Dr. Lyme: Okay.  Let's see. How is your joint pain?
Me: It seems to be getting worse. I've had to take more pain pills that usual.
Dr. Lyme: When did you notice that?
Me: About three weeks ago.
Dr. Lyme: Mmhm. And how are you sleeping?
Me: Good for the first 4 hours, then I wake every 45 minutes to an hour, til 7. Then I want a nap around 10.
Dr. Lyme: When did that begin?
Me: About three weeks ago.
Dr. Lyme: So.  I think it all comes down to you not getting enough quality rest.

(This has all become apparent to Sky King and me during the course of this discussion. This is common for me: what remains elusive during hours and hours of soul searching always becomes crystal clear when you verbalize something in front of someone that makes $200 per hour. You too?)

So.  I'm already on Ambien for sleep.  a half dose worked for the first couple weeks, then I had to increase to a full 10 mg pill.  Dr. Lyme is thinking that, since I cannot sleep without it (AT ALL, it turns out), I need something different.

But he's not a sleep guy.  He wants my primary, or my sleep doc, to handle it.  He is thinking that a drug, Sodium Oxybate, would be a good choice.  It's liquid, and I would take a half-dose at bedtime, then the remaining bit when I wake in the middle of the night.  Sounds fine. Whatever.  I just want to SLEEP.  Without the sleep, I won't get the better.  Without the better, I won't be able to to keep from stabbing people in the neck with sporks.  Vicious cycle.  So sleep drugs. Check.

We got through the rest of the visit, with him changing out my antibiotics.

I left, and went straight to Dr. Google.  Dr. Google has assured me that Sodium Oxybate is perfectly safe.  If I am a mixed drink in a bar, held by an unsuspecting future rape victim-Sodium Oxybate is known "in da 'hood" as GHB.  The latest "date rape" drug.  You know, because roofies are sooo 2004.

Side effects include bedwetting, difficulty falling asleep, and dry-humping strangers in seedy bar bathroom stalls.  2 of those are especially alarming.  I have a REALLY nice mattress that I would hate to "soil".  And, the whole reason for taking the drug is TO SLEEP.  Seriously, people.  As for the third? I just won't sleep in fishnets and a tube top, and I should be good. 

Stay tuned for part 2 of the the exciting Dr. Lyme visit.