Rest In Peace

So okay, I went back on the Copaxone. My wife made me. I suppose it's a good thing overall. For all I know, I had a relapse in the last couple months, what with all these various illnesses I've gone through, one after another--the kidney stones, the screwed up back, the weird abdominal pain, followed by the even weirder stinging skin. So much crap going on is bound to shake up the MS and have it bite back one way or another.

As it happened, my wife was paying the bills a few days back, and in doing so, it occurred to her that we were still paying for the Copaxone, even though I had quit the shots some weeks ago. She objected to this, predictably enough.

Well, I explained, I had already called the home infusion pharmacy with the question. What they said was that I needed to look at it this way: Say you bought a bottle of Tylenol, but you did not take all the pills in the bottle. You would still have to pay for the whole bottle, right?

The example did not impress my wife.

"That's BS," she said.

In any case, it was therefore concluded that if we were going to pay for the damn shots, I had better be taking the damn shots.

My wife is thrifty, you see, and cannot abide by waste of any kind. Money don't grow on trees, be those trees here or in Indonesia or anywhere else.

The familiar maxim is reasonable enough, of course. My own father used to say the very same thing. It does occur to me, however, that this is something, as are most things, that could be taken to a deadly extreme. It is for this reason that I will refuse as long as I live to purchase anything in advance toward application at the time of my death--a coffin, for instance, or a burial plot--for it might be decided that such investment of otherwise usable funds ought to be put to more immediate use.

Not A Perfect Poster Boy

Frequently enough I get visits here from various advertising/public relations agencies in association with post labels concerning the products they are representing--Copaxone, for instance; Avonex, NuVigil, the upcoming oral interferons, so on and so forth.

Sadly, I am afraid they will not be finding much to work with here. Rather, mine are the viewpoints strictly avoided and ignored by these interests. These people, after all, are employed to sell, not to warn, and so naturally prefer their efforts to result in the happy injection or oral imbibing of the drug in question (so good, so painless, so tasty), after which he who has received will straightaway head out for a skydiving adventure or the challenge of mountain climbing.

Why dwell on the negative things? Kidney stones, cancer, weird itchy deformities that swell under the skin, seizure-like shakes and chills? Straining at a gnat and swallowing a camel.

Well, I'm a spoilsport. I have developed over the past three years this strange, apparently unreasonable frame of mind that insists on ascribing some sort of natural wisdom to the insistent objections of my body.

Hello? Yeah you! I'm tryin' to tell you something here, buddy. You know that stuff you just squirted into my leg? Well, it HURTS LIKE THE DEVIL! WTF, man?

Yo, did my eyes betray me, or did that pharmacy insert say something about CANCER?

Well, it probably won't happen to me. That's where we all start. That's where the race begins. It won't happen to me because . . . well, because I'm me, and not the other people it happens to.

And that is perfectly true. Right up until it happens. For, you see, MS was not something that would ever happen to me either . . . until it did.

So we begin again. We begin at MS. We learn that injected interferons cause flu-like symptoms in many users, but that these fade and all but disappear in most users after some time.

Naturally, I must be like most. In fact, I must be more than most (because, again, I am me).

A year later, lying in the bottom of the bathtub, shivering so violently that it seems I and the tub, vibrating so, must at any moment break through the wall and into the bedroom where my wife is sleeping--just like the Kool-Aid Guy--Oh Yeah!--it finally occurs to me in the most persuasive sort of way that perhaps these symptoms will not be fading after all.

On to Copaxone then. On to kidney stones. On to the ER bed in the hospital, writhing in pain I had never before imagined possible--pain straight from the bowels of hell.

You're going to shove what up my what and do what?! Lord have mercy!

And so I quit, happy at last to die a slow, seizure-less, kidney-stone-less, weird-itchy-lumpless, carcinoma-less death by MS.

Sure, I'm a spoilsport--and loving it to the bitter end.

One More Toss of the Stone

Okay, I understand that we are all dead tired by now of hearing about kidney stones, but I just want to add a quick note before leaving the subject--hopefully forever. As of 10:10 am this morning I have not had to pass another stone, and I am hoping and praying that this is because there are no more stones to pass.

In the future we may try to avoid these by drinking lots of water, trying to eat a balanced diet, and avoiding things that are known to cause kidney stones--coffee, for instance, dehydration, too much vitamin D, and (at least in my now freaked out state of mind) Copaxone.

The bearing that MS has on stones, and stones on MS, is several fold. As mentioned, the injectable MS treatment, Copaxone, has been shown to cause stones in some people. This is at least partly due to the fact that Copaxone dehydrates, and dehydration causes kidney stones. The ingestion of too much vitamin D also causes kidney stones. We, as MS sufferers, are told to take vitamin D, since vitamin D deficiency is thought to be causative of MS. Well, vitamin D as it turns out also causes kidney stones, and so no more vitamin D for me. I would much rather stick with MS.

Any kind of stressful situation is bound to cause either a worsening in ones baseline MS symptoms, or even a new attack. Because of the physical stress on my body over the last week, my familiar MS symptoms have clearly worsened. My feet and legs, for instance, have returned to the severity of numbness that accompanied the initial attack over 2 years ago; i.e. I cannot really feel my feet at all and my legs feel rather like they were made from baseball bats rather than flesh, muscle and bone. In addition, a generally spaced out, congested, stuffy sort of sensation has returned to my brain, accompanied by confusion and a painful slowness of thought. Along with those good old hissing sounds I used to experience. Very hard to describe, and so I won't even try right now.

The goods news, though, is that this all seems to be an exacerbation rather than a relapse. And so I gradually return to my former state of ill-health with joy and thankfulness.

Wrong-Headed Planet

Now this may seen pretty stupid--which is probably because it is pretty stupid--but honestly one of my main reasons for staying on Copaxone (rather than switching to nothing) is the high cost of the medicine. This, you see, pays off the patient responsibility portion of my health plan, thus providing me with FREE prescriptions for the rest of the year--baclofen, gabapentin, ropinorile, lexapro, protonix, lortab, and last but certainly not least NuVigil, ringing in at $500 for 30 tiny pills!

I guess I'm just a terrible cheapskate, but there you have it. I just do not believe I could face paying $500 for 30 tiny pills. Just imagine how many packs of cigarettes I could get for the same price.

In addition, the fact that the prescriptions are FREE allows me to choke them down as quickly as allowed, and then go get another bagful of bottles without giving it a second thought, just as if I were picking apples off of someone else's tree.

This is called getting your money's worth. Isn't that how insurance makes us feel these days? Here we are suffering the constant burglary of our pocketbooks, and so of course if the chance arises to obtain an actual fair benefit from the exorbitant prices we pay, we jump on it, right? (This is meant to be a rhetorical question).

How often have you all experienced a disconnect between what your insurance calls full coverage and the bill that nonetheless shows up in your mail box? This involves a sort of math that is far beyond my figuring (though I will be the first to admit that I never was no good at math anyways).

But what I think is this--what I think is that the medical institutions, accounting for what the insurance will pay, simply raise their prices in response. It's something somehow akin to the way a car dealership works (think of the salesman in the movie Fargo).

This may seem unrelated (likely because it is), but did anyone read about that Russian cargo ship that mysteriously disappeared in the North Atlantic? It was there, and then gone, and no one has the foggiest idea what might have happened to it. This is a cargo ship, mind you, not a needle in a haystack. Would this make a good story line for a movie, or what? Oh, I'm sure there's a reasonable explanation, we just cannot see it for all the water and space in between.

Oh, and then there is the new found planet that orbits backwards. Yes. It's called WASP-17, and is about 1000 lights years away, give or take. The planet, as it seems, has it all wrong. It is a stubborn, senseless, backward planet.

That's one way to look at it. But how about this--how about maybe that one planet has it right, and all the rest of the known universe is whirling in the wrong direction? Who knows. What is common, after all, is not necessarily the same as what is proper.

The Fingolimod Miracle

New treatments for multiple sclerosis (otherwise known as new hopes) seem to be emerging from the forest of research like deer and badgers before a wind driven late summer blaze.

We read now (in Multiple Sclerosis Central) of Fingolimod offering the greatest hope (don't they all?), in that it reduces the risk of relapse by 50 percent--a mind boggling 20% gain over Copaxone and the interferons.

The miracles just keep marching on.

Is there a catch? Well sure, but nothing in life is 100% safe, right? Would you rather do nothing at all? How stupid are you willing to be?

Well okay, here's the thing, if you must know. First off, the product causes lymphopenia. What's that? Decreased lymphocytes. What's a lymphocyte? Well, who cares. Who needs 'em, right? They can probably be replaced by the consumption of broccoli or something.

Oh, also fingolimod causes bradycardia, at least with the first dose. Not might, but does. So spend the night in the hospital. Big deal.

Thirdly, the product can affect the electrical impulses within the heart. This is a chronic condition known as Wenchebach's atrioventricular block syndrome.

Hmm. That actually sounds kind of serious.

Still and all, it reduces the chance of MS relapse by 50%, making it the best available treatment for MS. Ain't nothing in life that comes without risk.

One more thing though. Patients using Fingolimod are more likely to experience serious opportunistic infections. And, uh . . . Fingolimod may predispose the user to various malignancies.

Malignancies? Gosh I hate that word. The M word.

But hold on a sec. MS itself does not cause malignancies of any type, and so . . . um . . . why again should I hop on the Fingolimod wagon?

Playing the Odds

We find, in the latest issue of MS Focus, that the upcoming oral drug, Cladrabine, has proven very effective in treating MS. However, it is also found that some people using the drug have developed significantly increased risk of serious infection and cancer.

All righty then. Lemme see now . . . uh yeah, I hereby withdraw my enthusiasm.

The funny thing is that this little caveat should be conveyed in such neutral seeming tone (like Oh by the way, perhaps we should mention). Research, as it seems to me, becomes enamored at itself, overly impressed with its achievements, under appreciative of the odds that the same could kill.

If you have MS, and if you go to a neurologist, chances are pretty much 100 percent that you will be put on the latest regimen of injections--despite the fact that the same will make you sick, or cause otherwise unnatural sorts of reactions--and if you are obstinate enough to refuse, you will be made to feel stupid, and careless, and maybe even fired from the particular clinic. Why? Because you have insulted the latest wisdom of medicine, and you have failed to appreciate the cutting edge reputation of your clinic.

Doctors are convincing as hell, and a person who is fearful, who is suffering, seeks to place his faith in the nearest hope.

We see the same thing with chemotherapy every day. That is the treatment. You got cancer, now you got to have the treatment. Period. That's how it is done.

Yes.

As far as I know, it killed by brother, my father, and my mother, and more quickly so than the cancer itself would have done.

I started out on Avonex. It was the best, I was told. At first you might suffer some side effects--flu-like symptoms, aches, chills, fevers--but these would likely fade and then for the most part disappear within a month or two.

For more than a year I patiently endured being sick as a dog every Thursday and Friday. I alternately shivered and burned, I endured aches in my legs that felt like broken bones, I walked around in a fog thicker than any that MS on its own had previously caused.

For you see, I wanted to do the right thing. I had a responsibility to myself and to my family. To shun the benefit of being 30 percent less likely to have a new attack of MS would be tantamount to sheer carelessness. Would it not?

And so that's how it works, folks. Now I am on Copaxone, which does not cause flu-like illness. It only causes burning or itching of the skin, bruises and weird raised welts, and sometimes, if you hit a bad spot with the needle, a feeling like you have shot yourself there with a small caliber pistol. So much better.

Or is it?

One often reads, in researching Copaxone, that exactly why it works is not exactly known. Interesting. Exactly what else, I wonder, is not exactly known about it?

And what are these persistent, itchy lumps that sometimes develop beneath injection sites? I put the question once to a Copaxone Rep over the phone. Well . . . you guessed it. It is not exactly known.

It is said that prayer has been shown in blind trials to produce curative results in test group being prayed for. It is not exactly known why.

What I'm wondering now is whether the percentage here is comparable to that gained in the medicinal results. Thirty percent, after all, is not all that much to shout about.

Blank

Another blank day, but different in some way than others. I don't feel confused, just blank. It's probably just life, as far as that can be differentiated from MS. Everything has a way of getting shuffled over time, so that what used to be readily apparent becomes just this or that card mixed in with all the rest.

I no longer ask quite so often "What am I so tired?" It has become a state of being, part of who I am. I am no longer surprised that I cannot feel my feet. Rather, it would seem odd if I could feel them, for the old feet walked out of my life more two years ago. I have not seen them since. I am now used to the ones I have.

One thing I am asking, however, is why were my Copaxone shots today and the day before SO DAMN PAINFUL!? Did I go too deep? Not deep enough? I mean, they were not painful when the needle went in, but within seconds this deep down aching showed up, and grew and grew until I could hardly stand on the leg, let alone walk around on it.

As always, I ask myself "Is this a good idea? Can it really be a good idea? To inject something that makes your leg feel like it's going to fall off?

Common sense would appear to provide its own clear answer--and yet I continue, day after day, for my faith is locked up in the conclusions of "the experts."

How Big A Deal Can Two Lumps Be?

Haven't taken my Copaxone for three days now. These permanent lumps under the skin freak me out. Lumps that itch. It's just creepy, ya know? Got one in my stomach, one in my arm.

I guess lumps under the skin remind me of the lumps that my brother and my best friend had. Lumps that ended up being cancer. Now of course it is perfectly unreasonable to make the leap from an itchy Copaxone lump to a terminal cancer lump, but somewhere deep down, where memory leaves logic behind and becomes pure reaction, I do make the leap; and I think Why am I injecting myself with this toxic chemical that causes permanent itchy lumps under my skin that might be cancer or God knows what?

Besides that, I feel okay (better, I think) when I'm off the medication. It's all very subjective. Maybe the only reason I feel better is because I am not creating new itchy lumps.

I remember when I was a young boy, about 12 I guess, I developed a small lump beneath each of my nipples. Oh my God, I thought, dear Lord in heaven--I'm turning into a woman! Help me Jesus! The panic I felt was indescribable; I was overcome by shame, up against an embarrassment so complete that there seemed no answer but to leap from a high window and end it all. Something had to be done, but what? My shame must never see the light of day.

In the end, as my bosoms became more and more tender, I made up a story wherein I had been hit in the nipple by a football (struck down and turned to a woman in the midst of playing a manly game). Thanks to my lie, I was able at last to take my growing tits to a doctor.

Hit in the nipple with a football?

Yes.

In both nipples?

Yes.

With one football or two?

Just one.

At the same time in both nipples, or once in each.

Well, it was different times, but the same day.

I see, I see. Hmm, hmmm. Curious--this doesn't look like a football injury to me.

I can imagine now the laugh he and my mother must have had upon retiring to his office while I was left in the waiting room--Just I and my imagination. A clear case of transgender syndrome. You will want, of course, to change your name. You could keep the R and just change the other letters around . . . from Richard to, say, Rachel . . . how's that sound?

I'm afraid we have a problem here, son. One cannot have both breasts and a penis. Something will need to go.

Yes, very strange, very strange indeed. I wonder if you would mind my showing you about at the next international conference of medical professionals? This is certainly a case altogether unknown in modern science. Have you noticed, by the way, any hint of a vagina coming on between your legs?

My God, if this is what I think it is, what we're looking at here is a completely self sufficient sexual organism--able both to impregnate and conceive. Why, from here forth you could populate the world on your own.

Well, in reality it turns out to be a fairly common thing for males in puberty to mimic a female attribute for a short time, a temporary confusion of biology, a mere hiccough in the progression to adulthood. I look back now and cannot help but laugh. But you know what? I am not laughing at these Copaxone bumps. No siree, Bob.

My Amazing Thumb

Yesterday I made the mistake of injecting myself with my Copaxone autoinject device without first pulling the top cap off, which itself removes the cap from the syringe. When the mistake is realized and one removes the cap after the fact, the syringe proceeds to squirt its contents in whatever direction the device happens to be pointed--on the floor for instance, or the curtains, on the dog, in the simmering pot of soup, or in ones own eye, and so on.

This is not an isolated instance for me, but falls very securely into the parameters of my personal norm. What was new, however, was that I tried to stop the gushing stream of Copaxone with my thumb, which resulted quite naturally (though my mind had not grasped it beforehand) in the impaling of my thumb on the needle protruding from the tip of the autoinject device.

The result of the above miscalculations added together was the injection not of my arm, not of my stomach, not of my back or my leg, but of my thumb with Copaxone. This is not a thing that is recommended in any of the literature that I have so far seen.

Nonetheless, some of the greatest discoveries of science and medicine have been the products of the purest sort of accident, and it is for this reason that I am now convinced that my thumb has never felt better nor more healthy in all its long life. It has become, in short, an amazing thumb--admittedly a little tender where it had been punctured, yet otherwise (and as a result, I believe) a thumb that is superior to perhaps 90 percent of all the thumbs in the world.

By faith--for I have no proving MRI or tissue sections--but by faith, and by the evidence of the thumb's motion and mood, I am convinced that this diminutive part of me, at the very least, is completely devoid of disease. It has become, quite miraculously, quite suddenly, the thumb I used to know, the thumb of my youth, a healthy, functional, honorable thumb. Were it attached to an equally competent body and brain, I'd be 30 again, or perhaps even 25.

Please do not imagine, dear reader, that the moral dimensions of this happy accident have escaped my notice. Every great boon comes with a great burden--to whit, shall I enjoy my thumb from here forward in the essential vein of a gift, providential to my person alone, or shall I donate my thumb to medical science in hopes that a cure for all might be gleaned from the chemistry of its revival?

So does my struggle continue and remain upon me, in body and soul, in heart and in mind. And most of all in thumb.

Happy Trails (or is it Trials)

Had my first Complimentary Customer Care Conversation with the Copaxone Consultants yesterday (too bad yesterday doesn't start with a C). You know, the ones where a representative calls in order to share how easy, and actually fun it is to inject yourself with toxic substances. Got my free products coming, of course--a durable plastic storage container for 30 glass syringes, another plastic container for travel, and a gel pack for injection sites. I was hoping for some Cuban cigars as well, but it looks like these are no longer being offered (if they ever were).

I also had the opportunity to rate various aspects of treatment and personal satisfaction on a number scale--1 equalling No, not really, and 4 meaning Yes, I love it!

When asked about my level of commitment to the treatment, I answered 2.

This apparently caused some red flags to shoot up with the interviewer.

Why 2? Are the injections unpleasant? Is there something we can help with? Do you believe you really have MS, or are you unsure? Do you need more literature about Copaxone?

No, it's just this irritating, unreasonable gut feeling that I cannot seem to escape--the feeling that somehow when ones body objects so strongly to the introduction of this or that foreign substance, it could somehow mean it's not a good idea.

Your body objects? How do you mean? Is there something about the injections that you don't like?

Well, I uh . . . .

Would you like to have one of our nurses visit your house?

No, I'm just saying . . . .

Are you having pain? Are you depressed? Do you have questions? Are you dizzy, breathless, confused, disoriented, having chest pains, gangrene, paralysis, loss of vision or function in any body part?

You know what? I wanna change that 2 to a 3. It's really not a 2 at all. I don't know why I said 2. It's more like a 3, honestly, or even a 3-1/2. In hindsight, I'm changing it to a 3-1/2.

Now that's more like it, Mr. Boughton. Keep yer chin up, will ya?

Happy trails to you, until we meet again . . . .

Gnats and Camels

A fellow Copaxone sufferer pointed out in a comment yesterday that Copaxone is associated with the development in the long term of certain cancers. It says so in the very, very, very small print on the packaging. I am taking her word for this, as the small print on pharmaceutical packaging is far beyond my ability to decipher, glasses or no glasses.

Naturally, I'm thinking Oh, no way! The last thing I need is cancer, right? I mean, cancer runs in my family to begin with. It has in fact made its own comfy home in our tree. Would it not be the height of stupidity to persist in injecting cancer into my body?

But the funny thing is that while I'm thinking these things, I am also puffing on a cigarette.

Once again I find myself gazing blankly upon my own hypocrisy.

Ye blind guides, which strain at a gnat, and swallow a camel!

Well, it's a habit. Hypocrisy, I mean, and tobacco as well, though I have not literally strained at gnats or swallowed camels. Yet.

I tend toward what is convenient, in deed and in belief. Convenient for me, that is.

I will bring this information regarding Copaxone to my neurologist, though I will not mention tobacco consumption. So there you have it. I ought, actually, to be ashamed.

New Life, New Med

Very soon now I will start on Copaxone, the non-interferon MS treatment that does not cause flu-like symptoms. Having had no relapses for two years, I cannot help but wonder if I need to take the medicine at all.

I remember how my son used to periodically decide that he had been miraculously cured of diabetes. He had prayed a lot, and his insulin requirements would seem to have diminished, and so he would quit the insulin altogether. Predictably enough, he would soon be running blood sugars in the 400s and 500s, and be forced to admit that he had not been cured after all. Not this time.

He has never given up. He continues the pattern to this very day.

For me, there had never been any doubt about his condition. Type 1 diabetes results from a destructive process in the pancreas. The ability of the organ to produce insulin and thus regulate blood sugar has been destroyed. You cannot magically revive the organ through either will power or prayer any more than you can raise the dead from their graves.

Why then is my response to my own condition any less final? Is is not infinitely more reasonable to conclude either than the Avonex has kept me from further relapses for the past two years, or that my disease has simply been dormant for a bit, anticipating the next opportunity for rampage?

Yes, I feel fine. But I felt fine also before the first attack, and before the second attack. What is real and what a delusion--the feeling of good health or the fact of disease?

In a funny sort of way, I cannot help but be taught by my son, for I have seen faith fall at the feet of flesh too many times to miss the point.

I have multiple sclerosis. It has taken sensation from my feet and legs, it has sapped my energy and sucked at my strength, it has dulled my mind and dug ruts and holes in the neural highways of mental conveyance, making me dull and sluggish, forgetful and confused, feeble, stupid, dim-witted, unable.

What is left to doubt? Is my case not just as clear as my son's?

Keep praying, my pastor says. Keep coming to church. We need to keep this thing down.

And take the Copaxone too, reason adds. Better safe than sorry.