With a Twist of Lyme: Beautiful Blood...Beautiful Brain

During my last post, I encouraged you in my true wiseass style to write your elected officials. So DID YOU? NO? Why the hell not?

Get off your lymie ass and just type up a damned letter. It’s really not difficult, I promise. No one will give a rat’s ass if you end your sentence with a preposition, split your infinitives, constantly misspell your words because you are now using homonyms out the ass because of your Lyme induced brain damage, or even if you change tenses throughout your letter. What matters is your message.

Chances are the actual politician is not going to read your damned letter – their grunt interns probably will and they will convey the message. So don’t worry about it – just write.

Here is a the link to find out just who you are writing to: (look I ended with a preposition – do you think less of me?)

http://www.congress.org/congressorg/dbq/officials

Now be brave and write.

TODAY’S MENU
ONE TOUGH BITCH
BRAIN PUS
DON’T KNOW – DON’T TELL
“HIPPO…WHAT?”

ONE TOUGH BITCH
Last Thursday I returned to my LLMD for my 3rd visit. We had much to talk about and I went with my standard typed agenda. I’m not the least bit controlling am I?

My biggest complaint was the fact that I’m now living with what feels like half a dozen steak knives stabbing my rib cage at various locations. Dr. N (LLMD) said it was the Lyme, and not to worry about it. I mean, HELL, I was starting to think I had pneumonia or that my liver needed to be exchanged because of the location and the intensity of the pain. But no, I’m not worrying about it…I’m just going to bitch about it incessantly because I like bitching…it frees me up a bit.

The next item we discussed was the fact that a couple of weeks ago when I went into his office with a 102 degree fever…that I had a serious bacterial infection and that according to him, I should have had … “one foot in the emergency room.” So by him saying that, that just goes to show you that I’m one tough bitch…because I planned one hell of a birthday bash for my daughter despite feeling like I was about to die.

(I didn’t go to the indoor water-park with all the girls – but I did manage to take care of all the fine details & I did interact with them a bit during the games at home…mostly, from a distance. AND I interacted with them multiple times throughout the night as they did not sleep...and neither did I!)

Anyway, he explained to me how to read a CBC – about the 4 main components. I am feeling very smart now. Feel free to email me if you want me to analyze yours for you. No charge –No guarantees.

(And if anyone from the FDA or some other governmental agency is reading this: “No, you jackass, I’m not serious. I am NOT dispensing medical advice to anyone….not really. Quit wasting taxpayer dollars by reading my bullshit on the job – unless you have Lyme and you want to help out with “The Cause”. If so, email me at: dr-wiseass@sbcglobal.net. Or, since you’re with the government, just look up my IP address, then track down my real name & address, and come on over and we’ll have tea. Sorry, can’t touch the ‘hard’ stuff now – I might drop dead.)

It’s so easy for me to get sidetracked…don’t care…it’s fun.

BRAIN PUS
After that educational session, we talked about my new diagnosis of Babesiosis. And yes, I know there were quite a few of you making bets on that one – wish I had gotten in on it.

For the uninformed, Babesiosis is like a relative to malaria. So now I have yet another infective substance hanging out in my bloodstream - and apparently for many years now. Good to know.

Dr. N was going to start me on Mepron for the Babesiosis until I opened my big damned mouth about some of the other “mysterious” symptoms I’ve had recently.

I won’t go into all the symptoms now because I have much to say, much to do, and my damned laptop likes to shut off with no notice, because it overheats, and the sons-of-bitches at the Sony repair center are apparently dumb asses. My warranty is now officially “out”, so I have to sit here with a F’ing fan blowing behind my computer so it doesn’t shut off while I’m in the middle of one of my rants. Meanwhile, because I’m lying in bed typing, my legs are freezing and I’m battling all the neuropathy pain. (The sacrifices I make….)

Oh, sidetracked again…. (Hey, have you ever noticed I have diarrhea of the ellipses? You know the …….’s?)

So I opened my mouth and told him about some of my hallucinations, and some seizure like things that happened in the recent past (have I mentioned those in another post?). At that point, he got up and reached for a book and turned right to the pages that explain about hallucinations.

He said that I perfectly described a “temporal lobe seizure”. Well, I am quite the perfectionist. Maybe it’s a Virgo thing.

I asked him if that meant that I have epilepsy, and he said, “no.”

He then said, “If the word ‘seizure’ bothers you – then we can use the word: ‘discharges’ – ‘temporal lobe discharges.’”

I said: “NO. That makes it sound worse, like I have pus in my brain.”

So we decided to stick with the word seizure.

I asked him, “Will Lyme cause me to get epilepsy?

He said “no”. But he said it with a look on his face that made me not completely believe him.

You know how sometimes doctors get that look – like they think you may have some serious shit but they don’t want to tell you until they’re sure, because they know if they just freak your ass out that it will only make matters worse…and who in the hell wants to deal with a freaked out controlling bitch anyway?

Hell, I scare myself sometimes. I don’t blame him if he’s playing some kind of semantics game just to keep me calm. I almost respect that – although it doesn’t keep me from going home and logging onto various message boards and asking lots of potentially dumb ass questions because I have this intrinsic urge to KNOW.

DON’T KNOW – DON’T TELL
I’m sure this overly compulsive drive TO KNOW comes from the fact that I’ve spent YEARS and YEARS dealing with docs that either don’t know or don’t tell.

Case in point: (And this is probably another rabbit trail…but you’re used to it, right?)
A few years ago I was suffering a great deal with my interstitial cystitis. (Interstitial cystitis is an evil bladder disorder that makes you feel like the lining of your bladder is being etched out with acidic shards of glass. Stop and pray right now you never get it.)

My interstitial cystitis (IC) doc sent me to a pain specialist. At first I thought the pain specialist was a great guy because he was gonna take me out of pain.

NO. What he did was put me on a lot of mind altering medication that made me feel crazy as hell. And naturally this was during a point in my life where I felt like my life was in some strange negative spiral…you know, when one thing after another keeps happening and at some point you just have to throw your hands in the air and yell: “What NEXT God?”

(Just so you know - My uncle was in the ICU trauma center because he had a motorcycle wreck…he died after six weeks; my dog had run away – then was found all mangled, barely alive and we had to spend money out the ass to get him put back together; then because I took care of his traumatized ass at home, there was a concern that I – and possibly my family members – could have rabies because we came in contact with his body fluids. And because I was on so many damned drugs, I couldn’t tell between what was a side-effect from the medication and what was a symptom of rabies – and I couldn’t get a doc to really give a shit. Then my best friend went into the hospital again because she has something wrong with her back and her liver and some other bullshit, and sometimes the nurses treat her badly, which means I have to go up there and cuss them about because I’m apparently better at it than she is. It was a scary, lonely, overwhelming time. There were other whacked out things during that time – but that gives you a pretty good picture.)

Long story longer…I finally marched up to the pharmacists and demanded all the little inserts for the various mild-altering drugs I was on – just to try to determine if my new symptoms were side-effect, an indication of rabies, or an indication of a new diagnosis like MS or Lupus.

I read them and decided I was experiencing side effects, so I took a friend with me for courage, and I basically told my pain doc that I was weening myself off certain medications. He was naturally agitated by this, and we basically parted ways. My only regret is not telling him I thought he was an arrogant son-of-a-bitch.

When I requested copies of my medical records from his office, I found out that he had written another one of my doctors a letter indicating he thought that I might have Lyme disease.

And that was the FIRST time I had ever heard of Lyme disease! And I only got to ‘hear’ about it because I requested my records. He NEVER mentioned that was something he was considering. The arrogant son-of-a-bitch.

Naturally, I took this info to Dr. PCP, and she ran a Western Blot thru one of the sorry-ass labs because she didn’t know any better. And yes, it came back negative although I did have several bands that were positive – just not the “right” ones or the correct number.

I can’t remember why I started telling that story…..oh yes, because sometimes docs don’t tell you what they’re thinking. If only I was a mind reader…..but then again, maybe not.

“HIPPO…WHAT?”
I finally went back to church Sunday. It was so good to be there – it really helped me to examine my focus on life. I know that my life is not all about Lyme.

I know that Lyme is just an experience I am having – an experiencing that I am progressing through, although it seems very slow to me.

We took the borrowed wheelchair, so hubby could push me around. (You’d think he’d like ‘pushing me around’…) It was good to see people and to get gentle, loving hugs. I’ve missed that.

After church, we went out to eat where I carbo-loaded pancakes and hash browns like it was my last meal. Perhaps self-medicating myself?

I then went home and took a 4 hour nap. No, that’s not a record for me – but it is a rather lengthy Sunday nap, I do admit.

I felt like I was almost in a coma and couldn’t wake up. I know I was having lots of dreams, even though I can’t really remember them.

The one and only thing I do remember seems quite significant…and now here comes another long-ass story.

Last year, around this time, my elderly Godmother died. She had been living with us for about 5 years, and had been my biggest and most vocal critic for over 20 years. She was a cantankerous old woman – and I loved her dearly – otherwise I wouldn’t have put up with her bullshit for so long.

When she died, I was blessed that she was able to die at home with us, in her own bed, while I held her hand. It is an image I think I shall never forget – watching her fade away – hearing the hospice nurse say: “This is it.” and me first begging her to breathe; and then finally giving her permission to go…telling her that it was OK, that all is forgiven, that her own mother awaited her arrival, telling her I loved her.

((I’m crying while I type this. This is really an emotional issue that I have yet to fully process.))

Anyway, during the dream, my Godmother walked up to me, and I was surprised because she wasn’t in her wheelchair or using her walker. I asked about this, because I was so puzzled. She said, “Walking this way is good for my hippocampus.”

I don’t think I knew what that meant in my dream, because I suddenly started thinking: She’s dead….why is she here….and then feeling a sense of dread because I knew she was gonna gripe my ass out about something.

I don’t remember what else happened in my dreams, but when I woke up, the word ‘hippocampus’ really stuck with me. I knew it had something to do with the brain, perhaps because I had to study anatomy in massage therapy school. (That word sounds like it means a university for hippos)

I booted up my damned Sony laptop soon after I awoke, and I “Googled” the word. It seems the hippocampus has to do with the…take a deep breath – the temporal lobes, and sometimes epilepsy.

That freaked the shit out of me.

I don’t know if she was coming to me in my dream, pointing me in a direction; or if it was my own subconscious mind. What I do know is that now I’m gonna have to present this information to my neurologist and hope to hell he doesn’t think I’m crazy as shit.

Whatever.