Step Into the Lyme-Light

Remember when I said that I would start blogging just a little bit at a time...you know, to pace myself?

Apparently I lied.

TODAY'S MENU
DR Wiseass is a Big Big Girl
My Daily Guilt
The Guilty Dog Hallucinates First
Blood-Sucking Insurance Companies and the Road to Enlightenment
Pull Out Your Kleenex Boxes
Lymie Ya-Ya
Tell It Like It IS

DR Wiseass is a Big Big Girl
Well, I finally went back to see Dr. SOB yesterday to get my test results.

Good news : I did not attack him in any manner. This of course shocks me. What is the Lyme doing to my brain that I should have such self control?

For those of you just joining the drama, Dr. SOB is the rheumatologist I saw a few weeks ago. He doesn’t believe in the existence of chronic Lyme disease. He is what we call a ‘Lyme Basher’. He’s also what I call a bone-fide son-of-a-bitch, hence the name.

I didn’t really want to go back to his office, because I knew I had no intention of ever seeing this man again. I really just wanted to ask for copies of my labs and move on already. But my new LLMD, Dr. N (neurologist) asked me very nicely if I would return to see him. (An odd request, huh?)

It seems Dr. N & Dr. SOB have encountered one another in the past…probably a few times. My woman’s intuition told me they have probably butted heads about a common patient or two, and that for me to actually be brave enough to go back to Dr. SOB’s office was important at some level to Dr. N.

Since Dr. N is in the process of saving my life, I decided to honor his request – no matter how much I detested the idea.

So yesterday I set off for Dr. SOB’s office, thinking that I’d rather go have a 4 hour PAP smear performed by a bunch of medical students in a classroom environment.

I didn’t really have any particular ‘plan’ as to how my interaction with him would be…

OK – that’s a lie. I did secretly hope that when I got my test results back & it showed that I had a low positive for ANA, which often implies Lupus, that I would ask him what the treatment protocol is for Lupus. I assumed & hoped he would say: “Steroids”. Because then I would be able to sheepishly NAIL HIS ASS because most Lymies know that steroids are a big NO NO for us because our immune systems are already immuno-suppressed, and steroids would only worsen our dismal situation.

Yes, I secretly wished that I could then say: “But now, Dr. SOB, what if by some small chance you are wrong, and I DO have Lyme instead of Lupus, won’t those steroids KILL MY FAT ASS?!!!! Wouldn’t that make your treatment DANGEROUS!!!!!!!!! (Or something like that effect. I was ready to improv.)

Alas, DAMN IT, it didn’t happen.


After my first appointment, I had sent out a request on Lymenet on ‘How to Educate a Duck” (as in quack quack). I got some great public, and private responses.

I had some material that I would have loved to shove in front of his face. I would have loved to be so on top of my mental game that I could go toe-to-toe - or rather blow-by-blow with him about this subject matter.

But I knew, despite all the pieces of great research and information I’ve gathered that he wouldn’t have listened to me. Hell, his pride won’t allow him to listen to one of the greatest minds in the world of Lyme, Dr. N…so what the hell kind of fantasy was I having that he would listen to a little ol’ dumpy patient with only a bachelor’s degree and a massage therapy license?

I KNEW he didn’t respect my opinion from the first 5 minutes I met with him. So why did I think I could change his mind?

I guess that’s me, the dreamer - the hopeful one that wants to convert all of these dumb ass doctors, you know, kind of like a Lyme Inquisition. “Convert to my beliefs and I’ll let you keep your testicles.” (I know women are docs too – but I think women are generally more ‘teachable’.)

So I really don’t know what happened. I just wasn’t in the mood to fight with him. As Dr. N has told me about other matters:

“Conserve your energy for life preservation.”

I guess I didn’t want to waste any more energy with this doctor. He didn’t deserve my personal effort.

After I left his office, I didn’t have any of those usual regrets about what I should have said, or HOW I should have said it. I felt strangely OK about the experience, even though it wasn’t enjoyable.

As I continued to drive, I passed a church that I hadn’t noticed during my drive to Dr. SOB’s office. There was a little sign that read,

“To belittle is to Be Little.”

Suddenly, I felt like a really Big Girl – and not just in my ass size, either.


My Daily Guilt
I started keeping a diary when I was a young girl. I mostly wrote about what all girls write about: the total humiliation heaped upon them by any association with their parents (Sorry, Mom. Ditto, Dad.); and of course, I also wrote about boys. Oh yes, and I often wrote about how I loathed my little brother who used to steal my belongings and hide them in his room – as if I wouldn’t bulldog my way in there and retrieve my crap from underneath his bed or behind his dresser.

Sometimes I would go for days, even weeks without updating my diary. When I felt compelled to return, no doubt because I just needed to vent, I felt this sense of guilt – as if I had ignored one of my friends by not keeping my diary informed of all the daily minutia of my adolescent life.

For some reason I’ve carried that guilt with me into adulthood. When I matured (OK – that’s making a BIG assumption that I’m mature now…) I stopped adding “Dear Diary” at the top of my pages which enabled me to refer to my writing as a journal.

I have kept a journal for many years now, and I find that I mostly turn to it when I need to bitch. It’s like that old invisible friend from childhood is still there waiting to hear it all; and perhaps to comfort me with a nugget of wisdom as I process my emotions. Yes, I think journaling – writing – can sometimes have a magical, emotionally healing effect on people – at least on me.

I wonder why, however, when I open up the pages and see that it has been days or even weeks since my last entry, that I still feel that sense of guilt for having “been away” for so long. I know if I had a friendship with someone that consisted entirely of me bitching to her about my pathetic problems, she probably wouldn’t feel any regret about all the time I didn’t call.

{Suddenly, I'm having an epiphany: Perhaps this explains why I
have so very little real friends? Perhaps I'm just too much of a
bitch? (Poor DR Wiseass.)}

Honestly, I think I feel the guilt because I’m denying myself what I need. Writing is a source of emotional, and even spiritual, sustenance for me. I know you may have a hard time imagining that my profane writing could have a positive spiritual effect on me – but it does…usually.

Now, most of my journaling has turned into this blog. I really started this blog for me - because I still NEED an outlet whereby I can bitch about my pathetic little problems, and I guess there’s a little bit of an exhibitionist in me that wants to bare my soul to the world.

I feel like I’m talking in circles (or typing in circles, actually) and I’m starting to feel dizzy from this topic. I guess what I’m trying to say is that when I DO finally return to my blog and write after a long absence, maybe it’s important for you to know that I do so with a sense of guilt for having been away for so long….not from you, per se – but from me – me and my inner bitchy voice. (Don’t get me wrong – it’s not that I don’t HEAR the bitchy voices in my head ALL THE DAMNED TIME – it’s that by avoiding the writing – working out my emotions through the process of writing – I’m not availing myself of the little nuggets of wisdom that I hear whispered in my own ears.)


The Guilty Dog Hallucinates First
Speaking of hearing voices, I’ve started having auditory hallucinations. Most of the time it happens at night when I’m trying to get some damned sleep. I hear strange sounds or voices and I pop up out of bed and must then go throughout the entire house checking it out – and peeping out through the blinds.

That is crazy-making. I will be addressing this issue with my neurologist, but wonder why I’m confessing this, my new level of neurological insanity with you people at this time. Maybe so you won’t feel like you’re the only crazy ass in the world peeping out between your Venetian blinds in the middle of the night because you could swear you heard someone say something? See how nice I am to you people? And don’t you feel better about your own hallucinations?

In addition to the auditory hallucinations, I’m now apparently having hallucinations up my nose. YES, DR Wiseass is now experiencing nasal hallucinations. Now – I don’t know if any diagnosis code exists for that, but frankly I don’t give a rat’s ass…which is similar to what I’m smelling.

I have seriously started to smell things that other people aren’t smelling. This is very distressing because the smell ain’t good. At first I kept thinking my family is just full of the silent, but deadly gas….and then yesterday, when I was all alone, I had to run to the bathroom to check to see if I had somehow lost control of my bowels and was too damned crazy to realize it. To my tremendous relief, there was no evidence of any such thing.

So there I was, with my lingering bouts of air hunger, and my mucous volcano still spontaneously erupting – and I’m sniffing around my house trying to find the source of the fart smell. I know what you’re thinking – maybe DR Wiseass has shit up her nose. But NO. Last week, I smelled mold.

So yes, even if my neurologist thinks me a lunatic, I will be mentioning this. Of course, I know this will only cost my insurance company more damned money because no doubt some additional tests will be ordered…I don’t care. Screw my insurance company – the blood sucking bastards.


Blood-Sucking Insurance Companies and the Road to Enlightenment
My insurance company denied my need for a motorized wheelchair, and I now must use my precious energy to appeal this decision – a decision made no doubt by some dumb son-of-a-bitch that makes minimum wage and probably has no damned idea what chronic late-stage Lyme is. The bastards.

I’m sure many of you are aware of how depressing it is to plead for a piece of medical equipment that, in your heart, you don’t really want.

I don’t want a damned wheelchair! But I need a damned wheelchair for now; and I’m just now starting to realize how much that breaks my heart!

Some people may think,

“Well, why do you need a power wheelchair? Your arms work, don’t they?”

My response to the ill-informed is: “Well, dumb ass – it’s not that my legs and my arms don’t work…I just don’t have the energy , or a speedy supply of oxygen, to propel my fat ass for very long stretches at a time.

I can’t even go up to my daughter’s school or to church without assistance. (Hell, I haven’t been to church in a long damned time. Do you think it shows?)

I can’t push my own damned self because my arms are weaker than my legs. I mean, even if I could bench press 180 pounds (the size of my fat ass – and the rest of me too) I wouldn’t have the damned E N E R G Y.

I believe that information was all spelled out in nice medical language for the insurance bastards. But NO. Now I must plead. They want me to grovel. Do you think anyone with a pen name: DR Wiseass enjoys the idea of groveling?

I have started the process of appealing my claim, and I notice that instead of my “professional” voice that I do still possess… somewhere lost in my brain….I’m using my DR Wiseass voice.

Naturally, I’m not coming out and saying they’re sorry sons-of-blood-sucking-bitches-and-bastards BUT the implication is there, provided they are damned smart enough to catch it. I’m wondering if this will work against me. Maybe I’m trying to self-sabotage because of my fear of having a wheelchair?

And NO – I don’t have some strange phobia about the chair itself – I’m not that screwed up. I’m afraid of crawling in and not getting back out.

WOW – I’m processing so much today. Honestly, had I not written about this - I might not have gotten to the epiphany that my sarcastic letter of appeal to my insurance company is really about my fear.

See how wonderful writing is as a vehicle to self-discovery?

Sure, I’m currently depressed – but also a little more enlightened.



Pull Out Your Kleenex Boxes
I’ve actually been quite depressed for a couple of weeks. I think it started getting worse after my first appointment with Dr. N when he told me I have “frontal lobe disinhibition”.

I can’t remember if I’ve written about this – but I’ll do it again simply because I want to.

Frontal lobe disinhibition is the fancy ass medical term that means your brain is damaged or screwed up in that region of the brain – and it effects your behavior. This is the reason that I feel free to call my doctors, or anyone for that matter, a horse’s ass…to their face.

Frontal lobe disinhibition is like being drunk all the time, only it doesn’t cost anything and you’re liver is spared. I think it’s why I feel like I’ve been experiencing manic-depressive type behavior.

When I’m in my “manic” phase (or what I deem my “manic” phase) – everything seems funny. I laugh at any kind of stupid shit, and if there ain’t any stupid shit to laugh at – then I just make some up. It’s part of my humor junkie mode.

In between the laughter are moments, and even days, where I am depressed. Sometimes I get really pissed, usually at my innocent husband. Did I mention that after 12+ years of a non-violent marriage, I threw a Kleenex box at him a few weeks ago and then locked myself in the bathroom and lied down on the bathroom floor and just cried til I vomited? (Incidentally, my husband was not seriously injured - just in case you wanted to know.)

NO, I probably didn’t tel you because that’s not funny. I much prefer laughing to weeping, even though sometimes there seems to be a fine line between the two.

Did I mention the time that dear hubby said something to me that caused me to start laughing hysterically….and then all of a sudden I threw myself on the floor and started crying hysterically until I felt like I popped a vein in my head? (And I’d like to add that pain was bad enough, that he almost called 911. But I pleaded with him to NOT do so, as I didn’t think a bunch of bumbling paramedics trying to force an IV needle in my veins was gonna take away the pain in my head!)

Have I mentioned all the times where I’ve been terrified because I sincerely thought I was losing what’s left of my mind? That I was so upset to realize that crazy people aren’t necessarily insulated from the realization that they’re going crazy? Sometimes brain damage isn’t as fun as everyone thinks it is.

I guess that’s part of the reason why I’ve not updated the blog for awhile. I’ve gone through many days where I am literally groping to find something to laugh about …anything at all.

I have found myself literally staring at the television experiencing no happy emotions at all while my husband is experiencing one guffaw moment after another.

That, my friends, is depression.

And yes, I’m on anti-depressants. Shit, I’ve probably got more anti-depressant samples than your average doc. I’m sure I’ve tried every ‘class’ and every brand on the market today…whatever is the latest and greatest.

Sometimes depression isn’t just about screwed up brain chemistry. Sometimes you have shit you have to deal with emotionally, and if you don’t – you’ll just suppress your immune system. And if you’re already sick, that’s the last damned thing you need to be doing.

That’s why I started the blog. I needed a dumping ground. Instead, because of the manic phases, I’ve used my blog as my own personal circus tent, doing my best to entertain anyone stupid enough to buy a ticket. (No offense, dear readers. Hugs & Kisses.)

But sometimes the clown makeup has to come off.

Have you ever heard that clowns are sometimes the saddest people? I understand that now.

I’ve NEEDED to write about the overwhelming sadness that comes attached with any diagnosis of chronic illness and pain. But I haven’t done that much.

Sadness isn’t fun. I want fun. Sadness sucks.


Lymie Ya-Ya
Yesterday I read the news that the famed author, Rebecca Wells, author of Divine Secrets of the Ya-Ya Sisterhood, and Little Alters Everywhere is now a fellow lymie.

The advocate in me was strangely relieved in some way to see another ‘celebrity’ figure disclose this information because I know (and you know) that if this damned disease is going to get the spotlight it needs in order for people to get off their asses and do SOMETHING, more celebrities are going to need to be involved.

But what a strange thing to want. Celebrities are human too. Their “fame” does not safeguard them from suffering. And since when have I ever wanted others to suffer? (OK – despite the fantasies of castrating a few Dr. Bubbas…) In all honesty, however, I wouldn’t wish this disease on anyone – celebrity or otherwise. I wouldn’t even wish this on Dr. SOB.

As I read the letter Rebecca Wells wrote to her fans, revealing some of her personal struggle and pain, I found myself crying. I was crying for her; I was crying for me; I was crying for all of us.


I may not know what it is like to be a celebrity, but I know what it’s like to be human, and to struggle; to bounce from doctor to doctor hoping to get ‘lucky’ and find one that’s not an idiot.

I’ve experienced the frustration of KNOWING something is legitimately wrong with my body, yet finding no one generous enough to validate that fact.

I know the physical pain of this disease all too well; and I am well acquainted with the fear & grief that rides shotgun along with the slow realization that life’s winding road may turn out to be a little more bumpy than expected.

I do not celebrate Rebecca’s Lyme disease, but I acknowledge that she possess the ability to bring more attention to it, and to do it with a poignancy that few of us possess.

I do not celebrate Rebecca’s suffering – but I do celebrate her artistic gifts; her spiritual insight; and the tenacity it takes to fight this disease, overcoming obstacle after obstacle, on the road to healing, and personal success.

I admire Rebecca’s courage. It’s one thing for a person like me to make up a little website and bitch openly about having a chronic condition that many in the medical community don’t acknowledge. It’s another thing entirely for a ‘celebrity’ to do it. It’s one thing for me to try to come up with funny shit to write about – it’s another to bare one’s soul. I think she has far more courage than me.

I know many of you may be thinking I’ve taken a big dive off the deep end and DR Wiseass is now officially gushing over a celebrity.

No. I don’t think so.

Perhaps I should let you know that, years ago, my therapist made me read both of Rebecca’s books, and to journal as well. I understood the journaling, but thought the book-club assignment was a little odd at first.

As I read Rebecca’s fiction stories, something within me awoke. Between my outbursts of laughter, I found myself weeping. Her stories had a way of burrowing in - making me reach a place inside of me where I understood the kind of pain her characters experienced. Her stories made me process some of my pain that I had kept stuffed inside for so long.

Although the stories she wrote, and the life I lived varied a great deal, somehow her characters managed to voice the same pain – the same emotion.

So I give credit where it is due. Rebecca Wells is a celebrity because her writing resonates with so many, particularly women. If you have only seen the movie, you may not understand. If you’ve read her books, I don’t have to explain.

Again, I do not celebrate her pain – the fact that she is now “one of us” – but I applaud her courage to write about and reveal her real-life God-awful pain – to write about the misery we all experience with an eloquence I can never touch.


Tell It Like It IS
Although I recognize a need for a greater spotlight to shine upon this disease (a Lymelite, if you will) - I do not celebrate the news of hearing about another’s suffering.

With that said, I think it IS time, however, that we all tell our stories, regardless of whether we possess the writing abilities of Rebecca Wells, Amy Tan, or Snuffy Smith.

Telling our stories – especially writing them down – has a tremendous power to heal.

In addition, telling our stories is EXACTLY what we ALL must do in order to get the attention of those whom we’ve entrusted with our legal & medical affairs.

WE ALL MUST BECOME ADVOCATES FOR THIS DISEASE – not just those that are famous and can probably burp out a more well-constructed sentence than we ever could. (See – that wasn’t a well-constructed sentence, but you understood it, right? OK – for the idiots among us: People like Rebecca & Amy Tan could burp a sentence more skillfully than we could take days and weeks to carefully craft. Now ya get it?)

Now is the time for all good lymies to come to the aide of their country…and their fellow lymies:

#1 WRITE YOUR STORY DOWN. Get a friend to proofread – you know, the friend with the fully-functioning brain that doesn’t use homonyms now because her brain isn’t full of Borrelia Burgdorferi bacteria. Get feedback. Be brave.

#2 Get on the internet…oh look, you’re already there – and after reading all my drivel – look up the email and snail mail addys of ALL your elected state and federal officials.

#3 Send your story to them. Include the part about your “overwhelming frustration” with your insurance company that is not paying for whatever Lyme treatment you are getting now, (or NOT getting now because you can’t afford it), along with some statement indicating that you are NOT a single isolated case. Let them know we’re like roaches. When you see ONE – just know there are THOUSANDS lurking around.

OK, so maybe you don’t use the roaches metaphor – they may think you’re doing drugs. BUT DO let them know you are not some freakish, bizarre case. Let them know that ticks and the critters they travel on don’t necessarily read maps.

Allow them to know you are suffering – that many of their constituents are suffering. (Use that word: ‘constituents’. If you don’t know that big word, look it up, you sweet Lyme brain you!) Let them know some doctors are too scared to buck the system, so they’ve stopped treating Lyme – or they’ve chosen not to recognize chronic, late stage Lyme because they would certainly be maligned by the stingy insurance companies who would rather not pay for long-term antibiotics.

Let them know you’re not gonna shut up until something happens…something for the good. Ask them SPECIFICALLY for help. They are YOUR elected officials…and you vote. Yes, you vote – that is what you tell them. You vote at every election and you will be watching their actions….and so will your friends. (You see how this works?)

They will send you a form letter back. That is OK. This is Stage 1.

(OK – I think it’s only fair to say now that when it comes to politics, I’m really just you’re average idiot. Politics gives me diarrhea, and probably for a reason. In all fairness to you, I think you should know I was the gal in the Political Science class that couldn’t figure out WHY if our country was experiencing such a huge deficit – then WHY couldn’t we just start printing out some more damned money?

Yes, I take the simplistic, possibly naïve approach to politics….but so what. The squeaky wheel gets the grease. Now, SQUEAKKKKKKK! )


#4 NEXT, take your story and send it to all your local media. Yes, I know – you don’t think they’ll give a rat’s ass about your struggle with American’s 2nd leading epidemic. You probably think your story of struggle with this disease is insignificant to others. Is it insignificant to you? Didn’t think so.

If I can submit all this bullshit for public viewing while I’ve got a fever, and a pain in my ribcage so intense that descriptive words fail me – well, then you can certainly write a damned letter to your elected officials, and your local newspaper.


Eventually, the hope is that we will get legislation before the federal government that will help those with chronic late stage Lyme – and the doctors who treat them.

Until then – we must carry on. It’s one step at a time.

Look at Rebecca Wells…she has Lyme and wrote another damned book when she was so weak she could hardly hold a pen.

Now start writing!

Pretty please?

Hugs & Kisses,

DR Wiseass