Living with Lyme Disease - A Real Roller-Coaster Ride!

Living with Lyme disease is like waking up with a different disease every day.

They say, variety is the spice of life - but this is ridiculous. My body feels like an amusement park for all my nasty uninvited microorganisms. However, I’m definitely not the one being amused.

Living with Lyme Disease is like being strapped in a roller coaster that doesn’t stop. I used to love roller coasters. I’d be the one sitting in the front seat or the back seat – hands up, screaming at the top of my lungs – just to scare some of the first-time riders.

I can’t even ride the sissy rides anymore. Extreme motion sickness. Vertigo and vomit ensues.

I say experiencing Lyme disease is like a roller coaster because I’ve actually had a few semi-good days lately. You know the ones where you think: Ah, the worst must be over. I can accomplish a few goals today – and then you bravely, and stupidly, set out to do just that.

That’s the ‘up’ side of things. Later you realize you are a real dumb ass, as you plummet at great speeds, thinking you will certainly ‘crash’ and die this time!

Good mornings come, and I just piss all that energy away, only to find myself in bed in the fetal position by late afternoon swearing never to do housework or errands again. (Actually, my husband thinks I swore these activities off years ago….so, shhh! Let’s not confuse him.)

TODAY’S MENU
Kazoontite!
Crystal Mud
A Drop of Madness
Giddyup!
Losing My Mind
2-4-6-8
The Mepron Diet

Kazoontite!
I went to see my LLMD for my 4th visit last week.

The first item on my list was to discuss all my twitching and tremors which have increased and then subsided a bit, and then increased some more, and then subsided a bit…you get the picture. (Roller coaster – waxing & waning)

I was worried that this indicted I might have some permanent Central Nervous System (brain & spinal column) damage, or even Peripheral Nervous system (arms, legs, etc.) damage. He said, “No. They’re nothing to worry about, saying that the twitching was a malfunction of one of the systems, and the tremors were a malfunction of the other one. Naturally I can’t remember which was which because he seemed like he was in a hurry, not wanting to educate little ol’ me on the mysterious world of the nervous system. He just reminded me that it was ‘par for the course’, and that was the end of that discussion.

We then discussed my hallucinations, which I felt had diminished, but wasn’t 100% certain as most of my weird experiences happen while I’m home alone during the day or while I lie awake at night trying to sleep. He asked me what kind of sounds, and I couldn’t really think of examples. My mind went semi-blank. Finally, I said: “Boots. People are walking on my roof!”

He then asked, “Do you hear voices?” And at the time, I couldn’t remember that I had heard the Chinese children singing….so I said ‘No’.

So apparently he concluded that I was no longer having hallucinations, and therefore we could move on with my treatment.

Although I was eager to ‘move on’ with treatment – I was still not satisfied with that lack of a conclusion about the sounds. So I asked: “Does that imply then that the sounds are REAL, and I am now hearing things that I didn’t hear before because now my senses are heightened?”

He said, to my surprise: “Yes. That is not uncommon.”

Great! Now if I could just have some super-human strength, I’d be like the Bionic Woman. I can almost hear the ‘music’ from the Bionic Woman in my head…you know the ‘da-da-da-da-da-da’ mechanical sound as she was hearing people conspiring to overthrow the government from miles away? Or when she was ripping a cyclone fence apart with one of her arms? Or was that the Bionic Man?

Either way – I think I shall make that my theme song. Ally McBeal had a theme song, and look how screwed up she was. I think all screwed up people deserve a theme song. Don’t you agree – my fellow screw ups?

((Interesting note: Today I heard someone sneeze. No one else was around, and I’m quite sure that it wasn’t me as I was not wearing any mucous. Now YOU tell me…was that a hallucination; was it my neighbor who lives almost an acre away from me; or am I so damned crazy that I can’t even remember when I expel my own body fluids?))



Crystal Mud
My LLMD is an interesting man. First of all, I love this man. I think I would publicly profess love for any human being devoted to saving my ass. I love Dr. N! I really do.

This love, of course, does not blind me to the fact that he is a little bit kooky. That’s OK. I’ve been to so many doctors that seemed to fit within the social ‘norm’ – yet they were complete idiots. So I’ll take a kooky genius any day of the week!

I also see Dr. N as being a very spiritual man, and he loves to use analogies to explain medical concepts. So I wasn’t quite as intimidated at sharing my ‘hippocampus’ dream with him as I might have been with an average doctor. (See my last post to learn more about my oh-so-very-exciting ‘hippocampus’ dream, and to learn what the hell a hippocampus is.)

I told him my dream, and he just looked at me for a minute. Appointments with Dr. N always seem to provide ample opportunities where silence just sits in the air, daring me to fill it with mindless banter. When I do – he usually shushes me because he is thinking, and then for a moment I feel like a very little girl reprimanded by the tall parent figure.

I asked him if my dream meant that I’m not supposed to appeal the whole power wheelchair thing with my blood-sucking insurance company, or if that meant there is something seriously wrong with my hippocampus.

More silence.

And then he finally spoke. I had waited a couple of weeks to hear the wisdom pour from my medical guru’s mouth…and he said: “I don’t know.”

WHERE DOES ONE FIND A KNOW-IT-ALL GURU THESE DAYS? He doesn’t know? You mean I have to interpret my own damn dreams?

He gently said, “I’ll have to give it some more consideration.” I translated that to mean, he would forget about it and so should I, unless of course I start having some kind of serious seizure activity, which then would bring us back to --- my hippocampus.

Because we had already talked about my hallucinations, which seem to have almost disappeared, him said: Perhaps your Godmother was alerting you to the fact that your hippocampus was involved in your symptoms, and now that has settled down.

OKaaaayyy. It’s all becoming crystal clear now….

Nope. That’s a lie. Still very muddy. Sludge, even!



A Drop of Madness

With that in mind, I then asked: "Does that mean we can start treatment for my Babesiosis?"

Now – for those of you that have never been treated for this infection which is like the cousin of MALARIA….asking that question is like asking to be slowly tortured - only I was blissfully ignorant of that fact when the words were coming off of my unruly tongue.

He looked at me again. More silence.

“Yes” he said. “You will start on Mepron. And you must follow my instructions very closely. I must write a different dosage on the prescription so the pharmacist won’t be confused. But you can not start on this dosage, or you will be critically ill. You are to start off with one drop only. ONE drop.” Dr. N was practically stern, and very step-father-like.

I knew intellectually that he was giving me these instructions for my own good, but emotionally I felt like he was a step-father threatening to get the belt.

He said: “If one drop makes you sick, then cut it back to half a drop.”

Suddenly the sarcastic voice emerged and I couldn’t stop her from hi-jacking my vocal chords:
“Well, how the piss do you take just ½ a damn drop?”

((What the hell was wrong with me? Why did sarcastic teenager voice surface to embarrass me so? Dr. N is not my belt-toting ex-step-father, now very much dead, may he rest in peace…)

Dr. N looked at me with his disappointed face. You know the one that all fathers know how to give their grown daughters: the “I’m disappointed in your behavior, because I know you have a better vocabulary, and you shouldn’t sass your elders – and I really don’t know what to do with you because I can’t ground you anymore ” look.

More silence. And then he calmly, and quietly said: You put ONE drop in a small glass of water. Mix it up. Then drink half a glass.

((What BRILLIANCE!))

“Then if that is too much, you only drink ½ of ½ - so that you’re only getting ¼ a drop. Do you understand?”

“Yes sir”, I chirped - realizing I’m sitting before BRILLANCE incarnated!

He thought my energized response was more sarcasm. “Let’s go over the instructions again” this time pointing at me briefly and then writing the instructions down on a separate prescription pad.

“Do you understand?” almost quizzing me now.

I repeated the instructions, trying to keep my vocal chords vibrating at the same monotone level, so as not to appear to be the sassy bitch that I have apparently morphed into!

((And by the way – if you are a sassy mouth bitch, too – and you happen to have Lyme disease – this can easily be explained away by the spirochetes swimming in your brain tissue. You mustn’t feel guilty. Embrace it. Use it for good. Explain to your in-laws that you are no longer in full control of your arms & legs a lot of times, nevertheless such a small organ as your tongue! Remind them the ‘real’ you would never have said those things…in church…in front of their pastor!))

Again, he thought I was not being serious enough. “You will get deathly ill, if you start off with a high dosage.”

“Yes sir, I understand.” I mustered all the sincerity I could so that we could move on to the next topic, which I had typed up on my agenda – of which I had given him a copy.

I tried to move on to the next topic: “Losing My Mind” – but he stopped me. I think he, being the one with the advanced degrees doesn’t like it when I try to run the show. He likes to take things at his own pace. This, naturally, frustrates the hell out of ‘Madam Control Freak’ – another one of my personalities.

Dr. N said: “Let’s talk more about the Mepron. It is expensive. Do you have insurance?”

“Yes.”

“Good. This medicine costs around $500.”

I suddenly tried to perform advanced math in my head – trying to determine what my pharmacy co-pay would be, while simultaneously trying to figure out how I would break this news to my husband. I don’t know why I attempted the whole math feat, as I still have to count on my fingers to add any numbers greater than 4.

Dr. N interrupted my silence with more of his words. “Mepron can tend to make one a little emotionally unstable. This is when the rider really must be in control of the horse.”

(Rider? Horse? I’ll bet I’ve missed something….damn the Lyme brain!)

“The rider & horse?” I asked this, faking a sense of humble timidity, so as not to wake his stern belt-toting step-father voice.

Giddyup!
As I’ve mentioned, Dr. N loves a good analogy. I think he’s mentioned something before about my horse being out of control – around the time he was telling me that I had “frontal lobe disinhibition” which is the medical term that excuses me from being that sassy mouthed bitch.

Dr. N turned my agenda over and on the back of the paper started drawing little pictures of a stick ‘rider’, and a little horsey – which I informed him looked more like a moose, and to keep his day job. He forced a smile. It was a pity smile – just like my husband gives me pity laughs when I try to turn any situation into a reason to laugh. (Why am I the only one that thinks I’m funny around here?)

He said, “The body is like the horse. This is the physical – your genetics, your (ego) personality, etc.; and the rider is like your soul.

This medication may make your horse feel ‘out of control’. Therefore, your rider must be in charge.”

Naturally I’m seriously paraphrasing here. No one can certainly expect ME to remember anything word for word anymore. Besides, I was too busy trying to keep up with the abstract conversation.

I, too, am a lover of metaphors – but thanks to the spirochetes and the protozoa (babesiosis) – it’s difficult for me to switch from a “concrete” type conversation to an “abstract” one, and then back again. It’s similar to me driving my husband’s stick shift truck. Sometimes I get so frustrated trying to keep from grinding the shit out of the gears that it’s hard to pay attention to the dumb ass pedestrian that has darted out in front of me! (God is merciful.)

He asked me if I understood the metaphor. Although I said, “Uh-huh” (which is an affirmative, for those of you that don’t speak ‘gutteral.’), apparently the glazed over appearance of my eyes conveyed to him that I was having trouble keeping up.

So – we went over it again. FINALLY, I understood. I said, “Oh, so you want me to find my inner jockey?!”

He said, “YES” with much relief, and just the tiniest hint of excitement.

But then, I leaned in a little closer to him and said,: “Fine. But what do you do when your horse is crazy as shit?”

A little exasperated, Dr N replied: “Reign it in.”

AH HAH! I understood clearly. This is the ultimate task – our basic human endeavor – to allow our spiritual nature to conquer our bodies. This is the ultimate goal – to realize & understand that “We are spiritual beings having a human experience.” This is opposite to how most of us perceive our lives, isn’t it?

Wow. I was feeling very spiritual about my shitty physical experience. I felt like my minister, herself, had just delivered a powerful sermon.

I was then sucked back into the physical concrete realm as he said: “Next subject?”


Losing My Mind
Yes, that is a subject that many people should bring up with their doctors – the feeling of losing one’s mind. But they don’t, and that is why we live in such a crazy ass world. Unfortunately, those people that are brave enough to say it are usually given ample amounts of anti-depressants and told to go home and rest.

But this wasn’t about me being depressed, although that is definitely an emotion that I have been grappling with the last few weeks…..okay, I hear you –“Tell the truth, wiseass!” I’ve been battling depression for MONTHS. Happy now?

One of the things that concerned me the most was the fact that that very morning, while attempting to give myself my heparin shot in my stomach, I caught myself just in time before I injected myself with a syringe of air. Yes, a whole syringe of air.

I am getting so accustomed to the process of the shot, I decided to multitask and read my email while preparing it. The only problem was that I forget to pull the medication into the syringe. I had almost pierced the skin of the bruised flab I call my stomach when I noticed it. It scared me to death.

We’ve all seen the movies where the evil person comes into a patient’s room they inject a syringe full of air into the IV tube of the unconscious victim….killing their poor ass. I thought for sure that I had almost killed myself. Like, whoops! Didn’t mean for that to happen!

But Dr. N did his best to calm my fears by telling me that I’m using the small insulin needles and that it would have to be a bigger needle to get through the layers of skin and fat & do any real damage.

I think I would have been offended about the whole ‘fat’ comment if it had been uttered by anyone else, and for a different purpose. But it was true. I do have quite a lovely layer of protective fat. God bless my fat.

That reassurance did not solve the whole ‘losing my mind’ problem. No, not at all.

I explained to Dr. N that I just can’t keep up with things. I’m constantly misplacing things; forgetting what I’m looking for; wondering if I’ve just taken my medications, and if so, which ones…my fellow Lymies understand, don’t you?

I told him how I kept forgetting that all those books from the library were not mine. I confessed that my library fines are now in the triple digits – that I am most certainly the “Queen of Library Fines” and I don’t like it one bit!

((I have had some books & cassette tapes checked out since…last JUNE!!! It is now May….HELLO?!! How does library book amnesia happen…and was this information perhaps locked away in my hippocampus? And why doesn’t the library have a special policy for the mentally challenged? They should excuse my fines. I shall write them a letter….subtly suggesting that they should have more compassion for the disabled…and perhaps I should take this matter up with the mayor, the city council, and our local newspaper with a circulation in the mega-thousands… NO. If I make a stink out of it – then my husband might surely get wind of it and find out just how high my fines are. It was a lot of books. Damn the Lyme brain!))

Dr. N suggested that I write things down in a notebook.

I broke out into an inappropriate amount of laughter. “I DO write things down, Dr. N! I literally have dozens of notebooks! I just can’t seem to remember what I write in which notebook, and forget that I actually need to consult them from time to time!”

Dr. N, in his fatherly wisdom said, “Use just one notebook.”

What a simple solution.

I decided I had taken up enough of my appointment time by being a pain in the ass (I mean there’s only so much a man can take) and I just said, “OK”.

Meanwhile, I was thinking to myself: “Yes, and then what the shit happens when I lose the notebook? Then I’m really screwed!”

We were almost to the end of my agenda, as we only had a couple more topics to cover, but I’m intuitive enough to realize that he was getting a little ‘antsy’ – knowing he had more high-maintenance patients waiting to be seen and needing to get the lunatic woman out of his office.

I quickly begged for a prescription for Diflucan for the yeast infection for which I KNOW that I KNOW that I KNOW I am definitely NOT hallucinating! (And for those of you that are eating lunch while reading this – I will be very kind and not go into any details about that! See how nice I am to you people?)


On my way out the door, I asked him about advocacy – about if he had opinions on what needed to happen politically for Lyme to be taken more seriously in the medical community, etc.

And he kindly said that he really didn’t have time to discuss it. But as he was walking me to the Vampire room – the room where my blood is (willingly) stolen from my veins, I asked him for just a quick opinion.

Instead he started talking about peace, and that politics is about adversity, and he wasn’t really about adversity, and suggested that I talk to others instead.

I realize if I pushed the subject with him, that my 'horse' was going to get really confused, so I just shook the flies away from my head and whinnied out: “OK. Thanks. ”


2-4-6-8
“2-4-6-8- C’mon Y’all Let’s Advocate!”

I came up with that cheer. Really creative & inspiring, don’t you think?

I think I shall take pom-poms to my next doctor’s appointment and try it out on Dr. N. Do you dare me? I do so love a good dare.

For those of you that have been following the melodrama of my blog – I will remind you that I am quite serious about this whole advocacy business.

I told you I have found a friend with much Capitol Hill experience – my friend “BB” – who is still NOT a stripper, despite the nickname I’ve given her. She & I have become such good friends lately. It really shocks me how well we get along & how much we’ve come to support each other – especially when I start to think: Since when did I start having friends? This is so unusual. I mean this is really an odd experience for me.

Sure, I have lots of friendly acquaintances that I speak to occasionally and would definitely support them emotionally if I knew they had a problem – but it’s the type of relationship that we don’t really do that because we don’t talk or see each other enough to realize that all our lives are filled with moments of crap for which we could be supportive of one another…because Geez – that’s a lot of damned effort!

So my budding friendship with BB is really a nice change for me, especially considering she is a nice conservative lady with strong ties to the political community, and I’m a sassy mouth bitch that looks at most politicians as being either as shady as a 50-year old elm tree; or more of a good ol’ boy goober than, well,…Goober from the Andy Griffith show.

“Shazaam!” Oh wait, that was Gomer’s line.


Now, have I told you the news? It’s so hard for me to keep up with things I’ve thought about saying or writing versus things I have actually said or written.

I’m starting a new website.

Yes, that’s right. DR Wiseass is a fool.

As indicated previously, I know next to nothing about HTML which is the language of websites – but I push forward – bravely conquering new worlds…..(insert Star Trek music here….)

For the past several weeks, I’ve been playing around with the free websites – which, for the most part, are OK if you want to keep things simple – but if you’re a complicated anal-retentive Virgo like me – those websites suck. Therefore, you move on to the websites that require money.

Yes, that’s right. DR Wiseass is a fool willing to easily part with her money. My hubby isn’t quite as willing to part with money, so let’s just keep this our little secret. Shhh!

And yes, I hear you. You ask: “DR Wiseass, you are a very sick & busy woman that can not keep up with the laundry, dishes, grocery shopping, or even updating your stupid-ass blog on a regular basis….why on earth would you devote so much of your valuable time & talent (hahahahaha) to trying to learn how to develop a new website?

WHY? Well, what a good question! You people are smarter than I give you credit for!

It’s all about the advocacy, silly! I can’t write letters to politicians and the media and use my DR Wiseass name or my DR Wiseass sassy-mouth bitch voice, now can I? I can’t send them to my damn BLOG for more information, now can I?

WELL, actually I can – and have upon an occasion or two – but I’m thinking a new website will give me more of a sense of credibility – at least for those who have not experienced my blog.

Naturally in the main website I will most definitely attempt to keep the following words omitted: piss, damn, shit, hell, ass, bitch, bastard, and F! Did I leave anything out? (AND NO! I try not to type the genitalia words…I DO have SOME boundaries, you know!)

And I hear you – weeping – getting all riled up thinking I’m leaving you….

But NO, no no! Don’t worry precious ones, I wouldn’t do that….even though I’ve put blog updates on the back burner a lot – it’s not that I’m gone….just sick & busy.

(Ah, I remember when my therapist told me she was going to be a real estate agent, hoping to make enough money to actually pay her bills. I started weeping – thinking she was ABANDONING ME!! I couldn’t take it at the time – had too many transference issues … Just remembering - it still makes me shake! Oh wait, those are just my fasciculations! (I believe that’s the fancy ass medical term that means all of my body parts are trembling. I could be wrong, though. It’s not in my dictionary.)

Hopefully before too long, I will announce the grand opening of my website, where YES, I will include my vulager blog as a separate page for those that must get their semi-regular dose of piss & vinegar.

Dry your tears, precious ones, it’ll be OK.



The Mepron Diet
As mentioned above, I got my prescription for Mepron last week. And Dr. N was wrong. Mepron doesn’t cost $500 – not around these parts. The retail price for Mepron at my pharmacy was a whopping $750 – which means my portion was $207. I do not know the complicated mathematical formula used to arrive at this $207 number, and at this point prefer to just stay ignorant. I just handed them my debit card, the one that has been used so much lately that the numbers have almost completely rubbed off, and did my best to fight the tears. And of course the Zithromax, which is like Mepron’s required riding buddy cost me another $60.

((Note to self: Talk to financial advisor about investing in pharmaceutical companies.))

On the first night, I took one drop. WOW! It was only a matter of minutes before the burning, spasming, and nausea started. I was thankful that I actually took Dr. N’s advice. It was a miserable evening.

I started taking the Mepron & my antibiotics at night because I’m under the impression that it’s best to do most of my herxing in my sleep. I’m real clever that way.

I stayed on the 1 drop for a few days, until I realized I wasn’t having hardly any herx at all. So I went up to 2 drops….and then finally to 3! My friend BB was truly amazed at how quickly I had ramped up my dosage because so many people just can not tolerate it.

I was just glad that I wasn’t puking my guts up, even though the nausea was starting to become more of a problem on 3 drops. But it was all happening at night – and by the morning – I usually didn’t feel too bad – almost ‘good’ even!

And then it happened: The nausea hit me the other day BEFORE I took my next dose. I was sick as a dog. Major food aversion. Inability to move a muscle without feeling like I would get an invitation to the white porcelain-bowl – an invitation I couldn’t refuse.

I calmly called BB’s number: “What’s wrong with me?”

She concluded that the Mepron had finally caught up with me. “Perhaps it was a delayed reaction, and now you’re paying for it” she said. She suggested I drop my dosage back down to two drops. I agreed.

The last couple of days I’ve been on two drops. Sugar-Free Jello and pretzels are now my main diet staples.

Since I started my Biaxin several weeks ago, I’ve experience some severe nausea from time to time – even had a couple of days where I camped out at the Porcelain Bowl Hotel. (Why is it when you want to puke, that lying naked on the bathroom floor is so comforting….you know, until you realize how filthy your bathroom floor is because not only do you ‘not do windows’ but you haven’t been doing bathroom floors either!)

I’ve been getting used to nausea – but I’ll tell you – Mepron is in a class all by itself.

But there is an “UP” side to the $750 liquid gold puke-maker.

Yesterday, before taking my shower I was standing around naked waiting for the water to warm up and I thought: “Hell, I’ll just step on these scales and see what magic number comes up now.”

I had no expectations. I just did it mostly out of boredom. I’ve come to accept my layers of fat as a way my body protects my major organs from spirochete damage – since the spirochetes love fat. And I’ve generally tried to avoid the scales, as to keep my depression at a stable level.

Thanks to this whole disease process, I had been an astonishing 180 lbs – and I know some of you out there weigh more, and just because I sometimes refer to myself as a fat ass, doesn’t in any way mean that I’m passing judgment on your fat ass. You must know that I’m a gal that freaked out when I gained that ‘freshman 15’ pounds in college, which brought me up to a whopping 125 lbs. Gee – those were the days, weren’t they?

So I hoisted my ass onto the scales. To my astonishment it read: “167.”

167? Are you kidding me? I first started to wonder if one could suddenly become dyslexic. I got off, then back on. “167” again!

I wanted to throw a damned parade. It seems that the antibiotics and the Mepron are like some magical diet plan for Lymies with malarial-type infections. Sure, I’m miserable most of the damn time – but I’m only 167!

Who ever thought I’d see the day where 167 would make me smile.

Who ever thought there’d be a day where I publicly posted the fact that my current weight is 167??

Yes, it was a good day….despite the chunks of vomit in the back of my throat.


Hugs & Kisses,
DR