Decisions, Decisions, Decisions

I’ve decided I’m pissed off.

It’s taken several days – actually a couple of weeks even to get me into this state; so clearly I’ve put a lot of thought into getting into the whole pissed off mood. I don’t even feel irrational about it. I feel I’m justified.

TODAY'S MENU
Hershey to the Rescue
Humor Junkie
Lymie Aerobics
Rolling, Rolling, Rolling, Get Them Lymies Rolling
A Sore Issue…and a Do-It-Yourself Attitude
Tasty, but Stupid
“Gimme-Drugs Gimme-Drugs Gimme-Drugs”
Dr. Hooters
New Diagnosis Codes
Hooray for the Co-Pay

Hershey to the Rescue
Ironically, I’m not really pissed off at any one person. I'm just pissed.

I’m not mad at God; and as far as I know I’m on speaking terms with all of my family members– not that we’re all actually making the effort to communicate – but I would speak to them if they cared enough to call me – although truthfully, there are some family members that would just stress me out more if I were to talk with them – but I’d be willing just because they’re family & I love them.

I’m not mad at any of my doctors, or their staff members, although I freely admit that I am frustrated beyond measure at this point. I’m not even mad at me for doing whatever it is that I have done on a physical level, metaphysical level, or any other “level”, that has caused me to be at the place that I am now. I’m just pissed off about being sick. I’ve decided I’m really really tired of it today.

I think it should be OK to just be pissed in general without having to have to be pissed at someone! Don’t you? Unfortunately, when I am in a state of pissed-offness, it is difficult not to behave in a pissed off manner to others, even if as mentioned, they are not a target of my mood. Does that make sense to anyone other than me?

I’m so pissed off now, that I am currently justifying eating what’s left of my “no sugar added” ice cream STRAIGHT FROM THE CARTON. If I am not feeling better after that – and after my anti-anxiety med has kicked in, I will resort to the 1 lb. bar of Hershey’s Dark Chocolate that I have stashed away in my night stand drawer for such a mood emergency as this.

On second thought…I shall add the chocolate in with the ice cream & I’ll just officially make it a pity party for pissed off DR Wiseass. Congratulations, you’re invited. Dress code is optional. (Hell, I’m not really wearing much – so I can’t expect you to dress up.) BYO-ice cream & chocolate.


Humor Junkie
During my last two posts I had told the tale of how I got to ride in the nice ambulance and how I had the privilege of experiencing the fun and excitement provided by my local Emergency Room.

Well, a couple of days prior to that I did something really stupid – but failed to write about it, because I was busy writing about all that other shit and trying to catch my breath. So – for your reading enjoyment – I will allow you to know just how damned stupid DR Wiseass can behave.

One day, while bleeding into tubes for yet another doctor, I realized I was in the very building of one of the few LLMD’s within my metroplex area. As a matter of fact, this doctor’s office was only two doors down! Coincidence? I think not!

I had previously called this LLMD about a month earlier and was told that he was not accepting new patients. Naturally, I was upset by this, but “moved” on.

SO – when I realized his office was just a couple of doors down, I decided to just “drop in” and ask to be put on a waiting list.

Now before I divulge what it was that I said to the receptionist…I’d first like to let you, my faithful readers, in on a little secret in case you haven’t picked up on this tidbit yet. As a chronically ill patient, my #1 coping mechanism is my crude, demented, profane sense of humor. Remember the saying that goes, “If I didn’t laugh…I’d cry”? That’s my motto. I just prefer to laugh at shit rather than cry – even if the shit ain’t always funny. It’s like my mind is on a mission to find the “funny” element in any & everything because I need it – like it’s a form of medicine. Laughter is one of my drugs, and I think I’m currently addicted. I’ll do anything to get it – including making inappropriate statements to … anyone, anywhere, at anytime.

There’s this old advice given to writers, public speakers, comediennes, etc. that says: “Know your audience.” When I’m seeking laughter, I usually discard that advice. Remember… it’s like I’m a humor junkie.

So I walk into the doctor’s office, go up to the receptionist window, introduce myself with my real damned name and inform them that I would like to be put on the waiting list…

"...you know, in case one of Dr. X’s patients dies before I drop dead – maybe I could actually get in to see him."

Yes. I actually said that.

Suddenly I felt like one of those pathetic contestants on Showtime at the Apollo who gets “booed” by the entire auditorium.

At that point I thought it important to let this dear young lady #1, whom had steam coming from her nostrils, know that I was just trying to be clever. I said, “Clearly, you didn’t find that humorous.”

Young lady #1 glared back at me and said: “NO, as we had a patient die this very morning.”

Naturally, I wanted to run out of the room (off the stage) because I certainly would NEVER have made such a statement had I been given this information prior to my little comedic “performance”.

I apologized profusely, which did not satisfy young lady #1 at all. She walked away from the window – clearly as an attempt to keep from killing me. So young lady #2, who didn’t seem quite as emotionally invested in the scenario, said she’d be glad to get a copy of my insurance card and driver’s license and put me on their waiting list.

So, like a true idiot, I gave it to her – which I noticed she copied & enlarged. Again, I apologized to young lady #2 because I was trying to regain some ground, and I was thinking there’s just no way in hell I’d ever be called. I was thinking that they would be posting my driver’s license picture in the staff lounge so they could throw darts at it, or smear their old gum or boogers on it. OH, I just realized they have my address. (Hey, do doctor’s receptionists have to take anything like that Hippocratic oath that says “First, do no harm?” Just wondering.)

Now, in conclusion to this little insignificant story – just to let you know how truly demented I have become – yet to also let you know that I still maintain some sense of decency (whatever little that may be) – I had a thought which, thankfully, I did NOT communicate.

One of my last thoughts before exiting Dr. X’s office was:

“Well, I’m assuming you have an opening now, so could I take the dearly departed’s next schedued appointment time?”

I DID NOT SAY IT --- but I sure thunk it.

Lymie Aerobics
After my melodramatic hospital episodes, I discussed with Dr. C (CFS doc) the idea that I might just need a handicap parking sticker – since walking more than 30 feet was not only an aerobic activity for me, but potentially dangerous as well. Because I had previously taken a bicycle stress test that indicated that I was “severely impaired” and that my mitochondria weren’t making enough energy for me to sit & breathe…Dr. C agreed.

After much (prior) prayer & consideration, I also initiated a conversation about me obtaining a damned motorized wheelchair. After some discussion, Dr. C agreed about that as well.

Now, my husband had driven me to this appointment so as to avoid me fainting while driving, and I dragged him into the office in hopes he could be my second set of ears – although he often doesn’t listen well or retain nearly as much information as my brain damaged mind does.

At this point, I think hubby is scared out of his damned mind about me becoming permanently disabled. I think this is a reasonable concern. I am concerned as well. But what was funny was that in the middle of this conversation about the wheelchair, my husband brought up the point about exercise.

I understand that he wants me to at least maintain what mobility and strength I’ve got now…hell, I do too! But hubby, not being as medically minded as the average American (simply because he doesn’t watch any of the medical TV shows), asked if I shouldn’t be doing aerobic exercise – you know, to keep my heart rate up. I almost busted a gut laughing at that because I’ve been tachycardic for over a year and all I have to do to “get my heart rate up” is fart.


Rolling, Rolling, Rolling, Get Them Lymies Rolling
A few phone calls and a few days later a gentleman came to my home to evaluate my wheelchair needs. For about two hours he questioned me about my current, and projected medical needs; measured the current size of my ass (at which point I indicated that we needed to plan some room for growth--just in case). Then he went about measuring everything else that wasn’t on my body: my steps, doorways, van bumper, etc.

I suppose the most grueling part of that process, other than the oxygen it took in order to speak, was to imagine what sort of future needs I might have with reference to the wheelchair. Because Lyme is unpredictable, yet often progressive in nature, I had to face some possibilities for my future that I just emotionally didn’t want to imagine. I don’t want to be handicapped, damnit – but according to my insurance policy, I only get one wheelchair per lifetime, so I saw the need to be realistic, even if it meant upsetting myself emotionally.

Now I must wait the months it will take for the paper work to be prepared, processed, approved by my physician, and then mailed to the insurance company where someone making minimum wage, whom is most certainly not educated about the ravaging effects of chronic late stage Lyme disease will decide my fate with regards to “awarding” me with a f’ing motorized wheelchair. In the meantime, I have to take life about 20 feet at a time.

As a courtesy, the wheelchair company who will be making a butt-load of cash off this deal has loaned me a manual wheelchair.

Have any of you with Lyme ever had to use a manual wheelchair – all by yourself? If so, I would like to hear from you. I want to know how you have managed such an accomplishment.

First of all, dragging that son-of-a-bitch out of the back of the van & getting it in the open position was a feat in & of itself. Next, having the upper body strength to roll my fat ass around was, dare I say, far more taxing than if I had just gotten up & walked.

My first & only solo experience with that bastardly piece of equipment was when I went for my appointment to my urologist. (Just can’t have enough docs, ya know?) Anyway, there was one point where I almost catapulted myself out of it trying to get over the threshold of the door; and then just maneuvering in the tight spaces of a cramped doctor’s office was actually embarrassing.

There were some old women in that office (I’m guessing in their 80’s) that, had they challenged me, they could have raced me in their wheelchair down the hall & beaten my ass off! At one point, I thought about just standing up and pushing the damned thing around like it was a grocery cart.

I know some of the people at the uro’s office were laughing at me. All I can say is, take a number asshole – there’s a lot of people laughing at me these days – that’s why I no longer make eye contact unless absolutely necessary (especially in the grocery store…see “Always Wear Clean Underwear – Part 1"). It allows me to sleep better at night.


A Sore Issue…and a Do-It-Yourself Attitude
While I was in the uro’s office, I was reminded that this particular doctor, while not overtly an asshole, was still an asshole at some deeper level.

I had made an appointment to see my uro because of the side effects experienced after taking the prescription given to me at my second visit to the Emergency Room. (See my post entitled “Always Wear Clean Underwear – Part 2"….but really, you might as well start with Part 1 if you want the whole story.)

The ER doc gave me a script for Toradol to help with the pain of the pleurisy. What I didn’t realize at first is that Toradal, while being a non-narcotic pain reliever, is also classified as an NSAID. Well, shit! I can’t take NSAIDs! I mean, I am capable of taking them, but most often when I do – my bladder gets totally PISSED OFF!

If you’re just now joining the saga of my blog – you may not be aware that while I am a “Lymie” - I’m also a card-carrying member of the Interstitial Cystitis club. Interstitial Cystitis (IC) is the burning, spasming bladder disease that Satan himself would be to chicken-shit to endure. I’m sure I’ve discussed IC ad nauseam during some of my other posts – go find ‘em if you care. Suffice it to say, NSAIDS with some IC sufferers cause them to suffer a great deal more. I am in that group.

I told my urologist, Dr. U, that my IC pain has increased and I inquired as to whether, since my last visit, a new miracle drug for IC pain has been developed. When he told me “No” – I asked him what he had been doing with his time? Dr. U clearly does not appreciate my sense of humor. "Well, UP his!"

Here’s what I don’t understand: They can make lidocaine shots & lidocaine patches…why in the piss can’t they make lidocaine suppositories that I could shove all the way up my vagina until it reached my bladder? I mean, I’m no damned research scientist and I don’t work for a drug company – but this seems like a simple idea to me.

(Matter of fact, I’ve got some juicy lidocaine patches; some gelatin & glycerin; and a do-it-yourself-attitude. I’ll get back to you on this matter.)

In summary, however, Dr. U basically told me that I must choose between which pain I’d like to tolerate: the chest pain from the pleurisy – which can be quite severe….OR the potentially horrifying pain of a pissed-off spasmodic bladder that feels like it must certainly be hemorrhaging on the inside. Tough call.
Of course, Dr. U didn’t use all the expressive words I just did because Dr. U has a penis and people with penises usually don’t get IC. Don’t ask me why.

Of course most doctors don’t know why either, because IC isn’t being researched enough because, once again, people with penises aren’t the ones that usually get it. This is a sore issue with me…in more ways than one.


Tasty, but Stupid
One day last week, I called Dr. C’s office because out of the blue – I was feeling rather short of breath – which made me feel rather “blue” (get it?). Actually I called Dr. C’s office AFTER I had written another one of my famous emails indicating that I was out of breath and wondering if they couldn’t send over an oxygen tank because I had no intention of going to the Emergency Room…again.

As a matter of fact, I indicated that I would not be going to the ER unless I was unconscious or dead. Naturally, I expected someone would call quickly to ascertain whether I was in a true 911 type emergency. NO.

I suspect they realized that if I was in good enough shape to type up a sassy email – that I was in no dire straits. This must have been the case, as I still live & breathe today.

After several hours, they sent some fella by the house that dropped off a pulse-oximeter (I think that’s what it’s called ) so that I could wear it on my finger that night when I went to bed. It was to record my pulse and the oxygen level reaching the capillaries in my finger….while I was sleeping!

This, of course, did not make a lot of sense to me as I usually do not find myself short of breath while sleeping, otherwise I would wake my ass up, and probably hubby’s ass, too.

Next day, a respiratory therapist came by to pick up the machine, and to assess me. (That word means to “examine” – and should not be confused with the word “asses” which is what I think about a lot of people in the medical community and some of my state & federal officials…I digress.) Naturally, the respiratory therapist said I sounded just fine to him (despite the fact that I had just told my friend that I felt for sure I was developing bronchitis or pneumonia). So fine – make a liar out of me!

The respiratory therapist, although a nice enough fella literally wreaked of cigarette smoke. As a former smoker I can be as critical as I want with regard to smoking. What I find interesting is that he was just one of many respiratory therapists I have encountered over the years who smokes. I just don’t get it. To me, that’s like a cardiologist whose diet mainly consists of bacon grease. Tasty, but stupid.


“Gimme-Drugs Gimme-Drugs Gimme-Drugs”
After my experience with the respiratory therapist, my friend drove me to my long awaited appointment with a so-called “Lyme Literate Medical Doctor” (LLMD) who is located in a big city which required us to drive on… the freeway! I had to have my friend drive me because, with my current propensity toward near fainting spells – freeway driving just doesn’t seem responsible. And I may be rude, profane, and eager to shove my foot into my mouth in the name of a good laugh – but I am NOT irresponsible when it comes to safety issues – although I have been known in the past to run with scissors, smoke cigarettes, and eat way too much bacon grease.

The appointment with this doctor was more than disappointing. I suppose I made the mistake of going to this appointment with the expectation that this LLMD would help me. I was hoping to acquire that elusive medication called “antibiotics”.

Dr. N (for nutty neurologist) did not write me a prescription for anything. Dr. N said I was in a “gray” area of medicine because I had the misfortune of having Hashimoto’s Hypothyroditis. Hashimoto’s is an auto-immune disorder that I acquired after giving birth almost 11 years ago. My understanding about Hashi is that it causes the body to make antibodies against its own thyroid gland, thereby making a person experience hypothyroidism. I have been taking medication for this condition for years and have not experienced significant problems with it until recently (which is another story for another day…provided I remember to tell it.)

Anyway – it was Dr. N’s opinion that the auto-immune nature of Hashi could possibly have tainted my Lyme lab results that I received from IGeneX labs because their Western Blot (WB) test is so sensitve. Dr. N thought that my tests could possibly be a false positive due to the Hashi.

When I asked Dr. N about all of my Lyme symptoms, knowing that any LLMD worth their salt realizes that Lyme disease is a clinical diagnosis – only verified by test results, Dr. N responded that because I have been diagnosed with Chronic Fatigue Syndrome – that those symptoms could fit under that category…at which point Dr. N suggested I buy a book about CFS or perhaps get on the internet and do a little research.

Now, keep in mind, I’ve been chronically ill (off & on) for over 2 f’ing DECADES. I was diagnosed with chronic Epstein Barr (long associated with CFS) back in the 80’s!

When Dr. N suggested that I educate myself about CFS, my friend turned to me with a look of panic on her face. See, my friend realized that I have an entire shelf of books about CFS alone – not to mention all the damned time I have on my hands to read about all the various ailments I have because I have too many f’ing various ailments to do much of anything else! I know my friend was just waiting for my inner bitch to emerge & give Dr. N the tongue lashing that was deserved from such a ludicrous comment.

As I was feeling short of oxygen and the room was already hot, I “ignored” Dr. N’s comment made from an idiotic assumption that I was just kicked off some turnip truck. I guess I was just shocked that she would make such an assumption about a patient that had given her a 7 page typed medical history, along with a 4 page chart summarizing recent, pertinent lab history; and an Excel spreadsheet listing all medications and supplements, which included not only prescribing doctor’s names, but the prescription number and the date of the last damned refill!

How condescending of her to think that a patient who came along with a notebook of all lab reports encased in sheet protectors would be so damned naïve that she didn’t know how to boot up the damned computer, get on the internet & look up shit about Chronic Fatigue Syndrome!

I was not immediately outraged at that because I was too busy wondering how she became considered an LLMD in the first place– although I recognized her question regarding the possibility of a “false positive” as being potentially valid.

What upset me the most was her comment about me being in a “gray” area and feeling she was practically pushing me back to my primary care physician for treatment.

I felt just crushed. And no, I didn’t have the expectation that she would open up a mysterious locked cabinet where she had a copy of the Torah, the Holy Grail, and the last bottle of miracle capsules that would cure all my ails… that she would bestow to me out of human compassion alone. No. I just wanted some f’ing antibiotics!

I mean, I felt like the John Travolta character, Vinne Barberino from the Welcome Back Kotter sitcom when he would say (in jest):

“Gimme Drugs, Gimme Drugs, Gimme Drugs.”

I just want some ANTIBIOTICS!

I did my best not to cry until I left Dr. N’s office.

I still haven’t cried to my satisfaction. Instead I’ve decided to just be pissed off….at least until I can find something new to laugh about.


Dr. Hooters
The next day, I went for my first appointment with a pulmonary doc. I shall call her Dr. L (for “lung” doctor). I had actually met this doctor previously when I had taken my Godmother to her a year earlier. She seemed to be an OK doctor – but more importantly I really liked her assistant.

Dr. L’s assistant, Christy (her real name) was just a living doll to me last year. My Godmother was living with me & my family & she was dying of COPD. (For those of you whom are current smokers – stop being an idiot. This includes you, Momma!)

Anyway Christy called me several times to check up on my Godmother and to actually offer me support, as I was helping my Godmother through the dying process.

So when I decided I needed to find a pulmonary doc, it was not a huge decision for me. It was whatever doctor Christy was working for…and it just so happened it was still Dr. L.

Dr. L’s office building is next to the hospital, but her office is at the end of the hall….down a long-ass corridor which seemed like maybe it was an endurance test just to get there. Yes, I almost fainted before getting there…and once again, upon my arrival I insisted that I be escorted to a room with a table or I would lie down in the waiting room. This technique, by the way, is starting to work like a charm.

Dr. L was actually very attentive and didn’t seem like a total idiot when it came to Lyme disease. This has become a ‘plus’ in my book. As a matter of fact, she decided to run some additional tests that have to do with connective tissue disorders – I guess trying to rule out other stuff. How very thorough of her.

Dr. L was very friendly, and extremely fashionable & attractive for a female doc. Now I’m not saying female docs aren’t attractive because I really haven’t paid that much attention… it’s just that Dr. L was wearing this hot pink sweater with IDENTICAL hot pink nail polish. What bothered me was that her lipstick didn’t match – but I’ll bet she toned down the lipstick so as to look more professional & “doctor-like”. I mean, this woman is actually very beautiful – long blonde hair and a bust line that really made me wonder if she worked her way through medical school working at ‘Hooters’.

I haven’t finished with all of Dr. L’s testing, but feel confident that she is as bright as she is busty; at least that’s what I’m hoping.


New Diagnosis Codes
This week I FINALLY went back to see my psychologist, Dr. S (for “shrink”). The last time I saw him was before Christmas when I was just in a total meltdown phase. I was just about ready to be institutionalized at the time, but I was afraid Santa wouldn’t visit me on the psycho ward, and I was quite sure no one would treat me for the underlying cause of my insanity – being the damned Lyme disease– so I declined the offer to be admitted.

Anyway – Dr. S read his notes to bring himself back up to date with who the hell I was – and he had written: “See patient weekly.” Seems I fell through those bureaucratic medical cracks.

I actually like Dr. S and have been seeing him for almost 1 ½ years – so I know he knows who I am. He has been very supportive in helping me cope with the mental angst of being chronically ill. I initially started seeing Dr. S because of a migraine that just wouldn’t quit.

We started doing some biofeedback on me and discovered I had more problems than migraines as my fibromyalgia and chronic fatigue symptoms flared up, followed by my interstitial cystitis, et al.

Dr. S says I’m like an onion – so many layers. What flattery. What I’ll bet he means to say is: “so many layers of dysfunction”. But he doesn’t say that because he’s generally a nice guy, even though for my diagnosis code he circles: “Neurotic Depression”.

Neurotic? Yeah, sure sometimes – I think that’s probably genetic. (Sorry, Mom.) Depressed? Yeah, sure sometimes. I mean, SHIT! I’ve been sick for almost 30 years – that’s kind of depressing, don’t you think?

But do we have to pidgeon-hole me with that? I mean – I’ve got lots of other shit that makes me crazy as a loon – couldn’t we blame it on that instead of implying that the neurosis and the depression are EXTRA diagnoses – independent of the fact that the inadequacy of the MEDICAL COMMUNITY as a whole sucks? Couldn’t we make up a new diagnosis code that says I have been screwed over by a few decades worth of worthless doctors that would rather make me feel crazy as shit than to admit they don’t know their asshole from any whole at all, therefore THAT is why I’m experiencing some neuroses and some depression?

Anyway, I stick with Dr. S because I think he’s convinced he’s gonna really help me one day, and because he laughs at my demented humor, even though I know he knows that I know that my humor is really just a cover up and coping mechanism for my deep emotional angst…which is caused from being chronically ill, thanks in part to those decades worth of above mentioned worthless doctors.

Dr. S dutifully listened to me bitch & moan for an hour, as I tried to catch him up on two months worth of health drama in an hour, which was a bit of a challenge especially since it is difficult to bitch non-stop when you can’t breathe worth a damned.

After my appointment with Dr. S – I went & sat in a crowded room for 1 ½ hours & waited to apply for my permanent handicap placard. I finally broke down and went & got it because I was so pissed off even before my appointment with Dr. S because I had to f’ing walk up a parking lot incline that was a big ass bitch to climb. The experience made me realize I need the primo parking, even though getting a “permanent” disability parking placard made me cry because – as I’ve mentioned, I don’t want to be disabled, damnit!


Hooray for the Co-Pay
And finally, today I went to see my primary care physician, Dr. PCP to catch her up on all the damned melodrama. Despite parking for the first time in handicap parking (for myself) – I had another near syncope episode which started before I even got inside the building. I thought I might pass out in the elevator filled with all the strange men, but I was determined that would NOT happen. The willpower of the mind is amazing.

When I got into Dr. PCP’s office, I went straight to the receptionist. She could see there was something wrong and asked me.

I told her that I was dizzy, hot, clammy, short of breath, and thought I might pass out if I didn’t lie down immediately.

This experienced receptionist, who looked rather shocked herself, said, “Oh, OK. Well, just sign in…and I’ll see about getting you in a room as quickly as possible….Let me first get your Co-pay.”

My f’ing CO-PAY? My knees were about to buckle & I was having a hard time breathing and she was asking for my credit card so they won’t miss out on my $30.00 co-pay? And I know she was just doing her job: Answer phone, greet patients, collect co-pay... but SHIT!?!

Most of me was worried about passing out in front of all the people in the waiting room; mostly concerned such an action would traumatize the little girl sitting with her mom. On the outside, I was just trying to stay upright and focus on my breathing.

On the inside I was pissed that my $30.00 co-pay seemed more significant than the cardio-pulmonary event that I was experiencing. And then suddenly, my coping mechanism kicked in and I was amused at the lunacy of that fact. I couldn’t afford the oxygen to laugh on the outside, but for a moment that inner amusement saved me….until later when I decided to be pissed off again.

Every day we’re faced with choices. Most days I try to have a good attitude. But every once in while, I think being pissed off enough to motivate me to write out the 10 pages of the bitterness than underlies some of my “humor” – must probably be OK….maybe even necessary.

I’m just glad today is almost over, ‘cause being pissed off takes a hell of a lot of energy!