One Sick Mother

If Alternative Medicine Fails, Then What?

I saw #26 (AKA Dye Guy) yesterday. He doesn't know what to do with me. I think he thought I had MS (they all do) or straight hypoglycemic fits (no) and when those theories proved wrong, then he was kind of stuck. We are going to try a round of chelation to see what heavy metals /toxins come out.  He keeps pushing this, and I suppose it is worth a shot -just to see if he is right. I have tried most everything else.

But I keep coming back to this:

What if he is wrong?  What if this one hits a wall, too (as they almost all do, eventually), What do I do then? Find another alternative medicine doc and hope that he has a little more imagination than Dye Guy?

Travel to China or the Far East for some real alternatives?  I can see myself now, somewhere in Southern India, sunburned to a crisp, with some mental Yogi guru type folding me upside-down and pounding on me feet to open up me shakras.

Or being made into an acupuncture hedgehog in China. That would be fun, I could start to convulse and drive the needles in all the way.  Trying to explain that in Airport Security on the way home would be fun.   "No I am not carrying a weapon... and you can't count the 15,000 acupuncture needles embedded in me arse, because honest to God, Officer, I did not intend for them to be in there..."

Of course they would all come flying out at my next MRI. I could picture that too, me there bleeding from  well, ...everywhere, trying to pick my way out of an MRI tube bristling with bloody needles, while a stern accountant type stands by, foot tapping, with a bill for the $300,000 MRI machine that I just ruined...

I would definitely counter-sue. 

That's the only certainty I see right now, because neither conventional nor alternative medicine seems to be helping one iota.

Certainty is a luxury and I'm on a tight budget.

Q: When Is An MD Not A Doctor?

A: when he is trying to be a psychologist.

Obviously, I am leaving psychiatrists out of the equation here, because they are trained in both fields.

However #25 is not a psychiatrist. He is a neurologist. But in recent conversations, I started to think he has stepped into the Twilight Zone between medicine and bullshit popular psychology and I am Very Afraid.

...because that's pretty much exactly what happened with 6½

And we all know where *that* little escapade landed me! If you don't please read the article "I could have told the FDA a year ago" located to your left.

(welcome back)

So yes. I say #25 a couple of weeks ago.  He had been in contact with #6 and was more interested in finding out what I do on a daily basis (depends on the day) than listening to my symptoms. Then he went on to demonstrate exactly how much of the information I had sent him was read or retained (i.e. none), poo-poo- all my concerns about a possible Chiari 0 Malformation, and explain how anti-depressants were often considered the Gold Standard of migraine treatment (yep he is back on that one again)  Hence the Nortriptyline.

I called him a week later, in hideous pain (around a level 8) from the neck down to the toes on one side.
"can the nortriplyine be causing this?"
"No."
"well, I can't think of anything else that has changed that might cause it"
"what do you have to take for pain"
"Advil"
When is the last time you saw Dr #2 (PCP)?
"November. But he will say it is neurological and refer me back to you"
"What did you do today?"
"Nothing! I can't do anything.  I hurt too much."
"well maybe you should go out for a walk. I know if I go out and move my body, I feel better."

Honest to God, if there could have been a way for me to reach down through the receiver and slap him silly, I would have done it. 

The he tried to tell me that the pain pathway I described didn't make any sense.  I told him that no-one had told my right side that, because that's what it is doing. I can only describe what is there.

So off he fecks, presumable to have a nice weekend, leaving me with no answers and no solutions except to bring my in-searing-pain, photophobic, buckly-right-legged self out for a nice walk, and maybe hope that my leg will give out at the right time for me to be run over by a truck and put out of me misery.

Instead, I went upstairs and had a good cry. That didn't help either, BTW (for all you practicing bullshit-pop psychologist out there).

I was up until 3:45am or so that night -for obvious reasons. Finally I took a muscle relaxant, because I did have some tightness in the shoulder and I went to bed. There was a rachety series of clicks in my neck and the pain began to subside.  Hmm, So I guess it was a disk or something.

So much for that "long walk" theory.  I have slipped many disks in my time (or the same disks many times) and never EVER had one put back in place by a long walk.

But I coudl see #25's bullshit pop-logic a mile away: OSM is depressed, therefore it is "imagined" pain, therefore let's get her out in the sunshine.  BULL-SHIT

Medical doctors are not trained in psychology. They are not trained to ask the questions to find out what is actually going on with a person psychologically. They are trained to make assumptions based on certain medical presentations combined with statistics.  This works for (many) medical conditions, but these assumptions are based on training and experience. Not on watching Dr. Phil.

When a medical doctor tries to apply this methology using  bullshit pop-psychology which is not based on real training, what you have on your hands is a breech of ethics. Not to mention the law.  A medical doctor is not qualified to diagnose if a person is sick because they are depressed or depressed because they are sick. Either way, all they can treat is the sickness, and should always refer the patient to a trained professional if they think clinical depression might be present (because drugs alone are not the answer).

To my mind, a MD's application of pop psychology thus, is bascially another "blame the victim" ploy: "I am unable or cannot be bothered to figure out this patient's real problem. Therefore, she must be depressed.  That's somebody else's problem. Buh-bye."

Maybe depression causes slipped disks. I'll have to research that one. Maybe I'll even publish a paper on it.

Children Are People Too

I wish more people would remember that.

I took my daughter to a children's hospital this week to have her cardiology work-up. She is turning eight, but still has a murmur, which they expected to have self-resolved a few years ago. She has Ehlers-Danlos syndrome, so it was important to make sure this murmur was not indicative of something EDSly sinister.

I had to bring my son along for the ride, because it is spring break. No problem. He is generally good in hospitals and doctor's offices, -provided he is not the patient.  For times when he is the patient, I have a  one-page information sheet which I keep in my purse to hand to  the staff so they can handle him a little better.   

I found myself wishing I had just such a sheet for my daughter when we got to the place. Not that she had difficulties or was was badly behaved, -she was good as gold. But the staff were treating her like so much meat. They never introduced themselves to her. They didn't warn her in advance what they were going to do or why. They didn't help her into the robe or explain what it was for or how to wear it.  They didn't reassure her until halfway through the (very long) visit that it wasn't going to hurt. And then afterwards she told me that the echo-cardiogram had hurt because the tech was pressing hard. (I wish she had said something at the time).

Luckily for both of us, I have had all this done before, so I was able to talk her through everything before it was happening or as it was happening. Even with my example, the woman performing the EKG did not get the hint. She remained stoic and businesslike, ripping those sticky pads off the poor child's delicate skin as if they had been stuck to the sofa.

I wouldn't have minded so much if this wasn't a specialty pediatric cardiology unit in a children's hospital. You would think they would know something about children in a children's hospital, for crying out loud! You would also think they would have been trained a little in how to put a scared child at ease. In my opinion that is just as important -especially in a cardiology unit, as knowing where to stick the EKG pads. Everything else was fine. The place certainly looked the part. It was bright with murals and pictures made of jellybeans (those were cool!).  They had activities in the waiting room and in each examining room. They had cartoons playing on a strategically-placed TV in the echo-cardiogram room. The doctor was wonderful and able to put both my children at ease in about two minutes (quite a feat). The only let-down were in the support staff: the receptionists, techs and nurses. 

I don't know why people who don't care for children choose to work in a children's hospital. It galls me to think about that.  There are many jobs in adult hospitals, and I am sure many child-friendly people willing to work in kids' hospitals.  I honestly thing medical professionals who plan to deal with  children should pass some sort of child-road test before their peds licenses are granted. But that's probably just me. I'm a bit of a hard-core advocate on the subject of medical licenses.

Oh and BTW, my beloved daughter got the all-clear. She definitely has a murmur, but they are calling it "innocent" and nothing to worry about.

Hurray!

The search for #27...

Not that I don't have faith in #25. However, way back in the beginning of seeing him, the subject of mitochondrial disease was raised. I asked him outright if he thought my condition may be mitochondrial in origin and he outright said "yes".  So way back in December, I started the search for #27. We'll call the prospective (and elusive) #27 "The mitochondrial disease rule-out guy (or girl)".  I like short, snappy titles.

#25 gave me the name of some super-duper expert dude who literally wrote the book on this stuff. After a couple of false starts (#25 spelled his name wrong) I tracked him down just before Christmas. Bizarrely, I ended up through to his voicemail, and I left a message. Not surprisingly, I didn't hear back. So Christmas was bearing down on everyone, and I figured there was no point in pursuing it right then.

So this year, I tried again. I couldn't get hold of super-duper guy. I finally got a receptionist or someone on the phone and she told me that super-duper-wrote-the-book guy no longer sees patients. He concentrates on research. They do have another doc who specializes in this stuff. Great! I ask for an appointment with him. Then they tell me that this other guy doesn't take insurance, and he won't diagnose and refer. Many specialist docs like geneticists don't treat on an ongoing basis. They will diagnose (or rule out) and refer you to someone else for ongoing treatment if needed. I would be fine with this plan as it is a fixed cost, and because it would be a trek for me to see this guy on an ongoing basis. I would like to be referred to someone closer to home.  However this particular guy was planning to charge the Earth with no hope of a referral to another doc and therefore I decided to pass. I am already shelling out big bucks for #26, who does not take insurance, and I can't afford to do it twice.

A friend-of-a-friend-of-a-friend has a mitochondrial disease, and through them, I found a woman locally who specializes in this stuff. Great! I call the office. She only sees pediatric patients. No exceptions. I ask if there was another doc in the practice who dealt with adults. "Yes" I was told. So I give all my details, set up the appointment, and the receptionist makes some comment which raises a red flag: "Does Dr X specialize in mitochondrial disorders?" I ask. "No he is a general neurologist" I cancel the appt. I already have two general neurologists on the 'current doctors' list and I have seen several others in the past. With the possible exception of #25, general neurologists are of little use to me.

I asked some other docs if they knew of anyone who works in this field; including my PCP, #25, my cardiologist and the alternative medicine guy.  No-one knew of anyone.

I tried Googling and searching and came up with nothing except for super-duper-wrote-the-book guy who but doesn't see patients. So I hit a wall. 

Well, I was at the rheumy this month, and I mentioned the mitochondrial thing to her. She seemed intrigued. I asked her of she knew of anyone who may be able to rule it out or in. She gave me a name. Great!  I called the name: Dr. L.  He is not my guy. But his staff suggested a Dr S. I call. Dr S could help me, but is not seeing any new patients in that office. If I travel 100 miles to get to his other office waaaay in the wilderness of a NYC burough -as far as it is possible to travel away from where I live and still have an NYC ZIP code.  I pass on that option.

So his staff suggest I call Dr. R. However, when I call that office, it turns out Dr R is a general neurologist -no good. So *his* staff suggest a Dr M. (are you keeping up here?) I call. Dr M is out of town but they will ask. I call back the next week: Dr M had been back in town, but is off again this week  -no word about my question. They have no record of me calling before, but they will leave a(nother) note. I will try again next week.

So almost 5 months later, I am still searching for #27. You know, I would understand this to an extent if I lived in a rural, backwards or sparsely-populated  community. But the doctors I was calling are all in New York City! What is up with that?

I will let you know if I ever find the elusive #27, but it seem that mitochondrial disease specialists are rarer than the Californian Condor.  Or maybe rarer than the Great Auk.  Maybe I will die old, still searching for the elusive #27, an obsessed and embittered woman...

Here's An Interesting Side Effect...

...from The Queen of interesting side effects.

I started a new medication last night. It is Nortriptyline for my supposed migraine syndrome (with no migraine headache) which #25 thinks might be causing the fits. I am supposed to this medication at night before going to bed.  Fine. That's what I did.

This morning, at 6:30am, I was woken by the feel of someone patting the mattress behind my left shoulder. I thought it was my daughter, although she usually pokes me, not pat the mattress, but who knows?  I turned around. No-one there. So I settled back onto my left side to sleep. I feel the patting again.  Odd.  Then I realize what it is: My heart is thumping and racing so hard, it is causing a vibration in the mattress that my shoulder can feel. Bizarre, huh?  I sleep on a Tempurpedic mattress, and although it is supposed to absorb movement, there are some movements it seems to magnify. Like racy heartbeats.

So I guess I will be calling #25 on Monday and we will be stopping this medicine. Another one bites the dust. I will try it again tonight -just to be sure, but I have a feeling it will become another entry on the rather long list of medications this sick mother cannot take. I just wish there was an easier way to build that list than to actually *take* the medication. Because that is such a crap shoot. Here is what I do if starting a new med (or raising the dosage):

I research it first and know the possible side-effects and warning signs. I wait for a time when I am least likely to be alone, usually the weekend. I warn Himself that I am starting a new drug and where it is, so he can grab it to take with us if we need to go to the ER. I don't make any plans except to be home and not alone, and then I take the medication and hope for the best.  Fun.

I saw #25 on Friday, hence the new medicine. He is not happy than I have gained 30lbs. I'm not happy about it either, I tell you, but I explained that if I eat a high-carb, low protein diet, I seem to have less of a problem with fits. I still have them, but not  every day. However, as I am hypoglycemic, this plan causes me to gain weight. A lot of weight and quickly. So he nixed that idea. "don't treat yourself with food" he said. I did a triple take on that before I realized he meant don't medically treat myself, not treat treat myself (although he meant that too).

But how can I *not* treat myself with food, when I know that food is the big, big trigger for the fits?   I am going to try it his way; eat the way I am supposed to eat, and take medication to handle the fits.  But I suspect not *this* medication.  Next weekend, I will probably try another one.   I can wait.

EDS is More Than "Stretchy With a Bad Heart"

Three times so far this week, I have had the opportunity to discuss EDS with doctors. One was an orthopedic surgeon I vaguely know socially (our daughters are friends and were at a birthday party together). Then there were my kids' ophthalmologist and my own rheumatologist.

Two of the doctors were waxing lyrical about the heart problems associated with EDS and how we are sooo lucky not to have them. Now, while I concur with this (I really don't want to have heat problems and I hope my daughter gets the all-clear during her heart checkup this month), this does not mean that without cardiac involvement; EDS is a simple matter of being able to do party tricks without consequence.  I was particularly surprised by the orthapedist, BTW. I really thought he would *get* the problems of dislocations, subluxations, slippy discs and other muscular skeletal issues more than most.  He didn't.

Personally, I think EDS is at the root of almost all my health problems: I really think it is somehow  the cause of my syringomyelia. I *know* it causes most of my pain (at least my rheumy doesn't downplay that aspect) and I am pretty sure it is the reason I can't absorb some vitamins properly. Maybe it is the cause of the metabolic issues too. Who knows? No-one, because it is considered "very rare". it's not. It's just underdiagnosed and therefore hardly studied. And even if it was studied and the results published, I wonder how many doctor would care/read/understand?  I think my rheumy would, but she would be about the only one. It bugs me that even when their patient has a rare disorder, most of my doctors (and my children's doctors) have not bothered to learn anything more than how to spell it. It is galling 

Of course some doctors are up-to-date with the current learning and research, but they are truly rare.

<sigh>

I wish there was a way to mass-download new information and research about a disorder or drug to doctors. I mean directly into their brains. That way they wouldn't have to to looking for it.

Friends, e-friends, "friending" and people you just want to...

...fuck.

Because let's face it. Some people do fall into that last category, just not many of us will admit it as freely as I do. Not that I would act on this desire -I hasten to add. One Sick Mother is very cognizant of her marriage vows.  Doesn't mean those thought doesn't sneak in sometimes, though. I am only human...

But really, the theme today is friends and friendship and what is all that about anyway?  I mean, it seems simple. It used to be very simple.

You met people at school, work or around. You found things in common, you hang out together, you remember each other's birthdays. When things go wrong, one person helps the other. when things go right, you share in each other successes. Simple.  ...Right?

But I think the concept is evolving. Especially now, as the Internet is bigger, the world is smaller, and you can have good friends you never met living on the other side of the world.

That last part is mad, eh?

My son, who is in 4th grade and on the Autistic Spectrum, has been struggling with expanding his notion of friendship. It used to be super-simple. He had three friends in school, one with which he was especially close. He also has had one "enemy" since first grade. Then this year, his bestest friend befriended his "enemy".  My enemy's friend is my enemy, right? Well, what if you deep down really like the enemy's friend and don't want to be his enemy?  But you lack the comprehension and the skills to navigate this problem?  Yep. Your mom gets a call from the teacher.

I remember those days. I remember fourth and fifth grade and being in the center of one of these "friend triangles".  Funny, I am still friendly with both of those women, and one still bitches about the other. Even after all this time.  I don't flatter myself that is it because of me. I think of them like magnets who can both attract and repel each other depending on how they face each other on any given day. I guess that makes me the iron bar.  Hmmm. that's an interesting analogy. I may try it with my son...

But really what has been on my mind is how my friendships subtly (or not) changed after I became ill. It is very true that you find out who your true friends are when things go wrong. I have been shocked and humbled by the support I have received from some people: People I didn't know very well or for very long have really gone out of their way to help and support me. And yet, some friends that I expected to be supportive and *there* for me -some of whom I have known for a very, very  long time, have relegated me to the "acquaintance" pile.

Why is this, I wonder?

I mean, I really wonder. In fact, It has bugged the shit out of me for months. How has the fact that I am ill fundamentally changed me so that someone just does not want to know me anymore?  I am still the same person.  But then I thought maybe it's not me that has changed. Maybe it is them. or maybe  it is something different. Maybe some factor in the friendship equation has been changed, and it doesn't quite balance out for the other side anymore. But what could have changed so much? What exactly *is* friendship anyway?

...besides a boat in Salem.

And so I got thinking about the nature of friendship and what it means. I mean what is the essence of friendship if you boil it all down?  Just liking somebody?  No. there is more to it than that. Having a shared history?  Well, yes... That can help. But some of my close friends have been acquired recently or indeed remotely, and there is little shared history, although the may be a lot in common.

I have Googled friendship and looked up definitions, but most of them are very romantical and watery:

"The state of being friends; friendly relation, or attachment, to a person, or between persons; affection arising from mutual esteem and good will; friendliness; amity; good will."

Yes that's all very well but why? Why be friends in the first place? What is the glue that holds friends together? Mutual esteem and goodwill? Yes. it's nice. And not unimportant. But I don't think that's the key.

Then I grabbed these definitions  -supposedly entries from a contest a newspaper once ran to define friendship:

"One who multiplies joys, divides grief and whose honesty is inviolable."

"One who understands our silence."

"A volume of sympathy bound in cloth."

"A watch that beats true for all time and never runs down."

The winning entry, apparently:

"A friend is the one who comes in when the whole world has gone out"

OK these are even worse. Not that they are bad. They are lovely and poetic. And although I get them all on one level, they fail to satisfy the hardline analyst in me. I still want to know WHY do people become friends in the first place and why may they later "unbecome" friends? 

Hmmm. Train of thought logic has it's place sometimes. Because I just stumbled on a good word here; "unbecome". (is it even a word? my spell checker says no, but I like it still). I wonder if "unbecome" is a keyword in all of this?  If I am no longer becoming to you, I am unbecoming, and therefore you dump me?

It's a start, but not quite there yet. And maybe "(un)becoming" is too shallow a word. But how about "enhance"?  Friends enhance each other. I like that. Because it fits a multitude of friendships which may be enhancing for different reasons. Business friendship: OK that is obvious. And social climbing friendships. How's about apparently unequal friendships? Where one person may seem do more of the "giving"" and another apparently more of the taking? Well perhaps the giver finds giving enhancing. Empowering even.

I think I may be onto something now.  Because what becomes or unbecomes us in our friendships? What might be another word here? Empowerment.

Friendships empower us

And so I think I am getting to the root of friendship:

Mutual Empowerment. Simplify this:

Power.

Think about it. 

Not that all people are shallow. I don't mean it like that. But in order for a friendship to work, there is a balance of power if you will. Both parties must contribute and withdraw to maintain the balance. It probably settles into a certain structure pretty early on, and the parties become comfortable with that. If the balance is later altered, the other party may have to adjust or it the friendship will fail.  So it really is like a boat, I suppose. More a raft than a ship, but it now strikes me that "friendship" as a concept is rather well named.

So by becoming ill, I have changed the balance of power in some of my friendships. I guess I understand a little better now. Not that I am happy about this. Or willing to forgive. And indeed this realization opens up a whole 'nother box of questions about the friends who have NOT abandoned me in my hour of need. What qualities do they possess that the deserters do not?   What was different in our becoming, empowerment, or balance that nothing seems to have altered there?

Or maybe we can throw out all this analytical bullshit and conclude that they are just better people.

Maybe they are.

And lastly, About those people we want to fuck. Because they are a special category of friend in themselves. The usual friendship rules don't apply here because these friendships are usually one-sided. Right?  I thought back about people that I have felt that way about, and I realized that I moved on when when the circumstances moved on. I never clung to the fantasy. And I thought about the people who I suspect may have those feelings for me, and some of them still contact me every now and again.  Which to me means there is probably truth in a saying I coined long ago:

Hope springs eternal in the human penis.

(I am really tempted to post another picture of Viggo there, but I shall refrain...)