One Sick Mother

Rock Star Doctors

So I saw the rheumatologist yesterday. I see her on a regular basis for the EDS-related "stuff": joint pain, hands going wonky etc etc.  She didn't shed much light on the right leg situation except to agree with me that it is probably neurological.

Of course, yesterday morning I realised that I slipped a disc in my neck last week and the leg thing started in ernest around then. The slipped disc is probably on my spinal cord (again).  It definitely was last week. Burning pain all down one side into fingers and toes is a bit of a giveaway on that one.

So anyway, I told the rheumy the story of the Tilt Table Test (I need to put that one in here. Soon. I promise), and mentioned that the Tilt table guy was supposed to be a rock star in electrophysiology. "Really?" she asked, impressed "You saw L?".  "No" I replied. "His name was "J"". "Oh." she looked disappointed and then shrugged "Maybe there are two.".

Hmmm. Maybe.

Then I got to wondering much room there is in electrophysiology for rock stars?  OK it's  a bigger field than say -Chiari, but I would imagine it's still not enormous. So I got to thinking maybe one of these doctors isn't quite a rock star.

And that might be OK. Because what would a rock star doctor be like anyway?

I imagined some youg dude coming into the room. drunk, trailing a retinue of hangers on. He would virtually ignore me, hit on the nurse, smash up the room, scrawl some indecipherable lyrics on the wall, throw up on my shoes and pass out in the bathroom. 

Hmmm.

OK so maybe I need a more mature rock star. One who has been through rehab, has settled down with a rock of a wife and raised a family. That brought Ozzy Osbourne to mind: "Shaaaar-ron! Have you got another size 22 IV needle? I've only gone and dropped this one in me tea. ...Oh wait. It's alright. I've fished it out. I'll just suck the tea off and it will be fine. It's only tea, after all..."  OK. Maybe not that.

How's about someone fairly sensible? Maybe a Sting-like type? I could just see that: He would come into the room and instantly decide me shakras were all out of whack. So he's beat me about a bit to loosen them up, tie my feet up around me neck and tell me to stay like that until he comes back to check on me.

...next week.

Then he'd bugger off to Montreal to cut a new record.

Maybe I don't want a rock star, after all. Maybe it would be better to find the talented guy with a good voice who plays in a cover band. He shows up night after night to perform mostly the same material to mostly the same audience. He doesn't stray far from the original materal, doesn't change it or improvise. He might perform one of his own songs, but they generally don't go down so well. Because most people want the old classics. The vast majority of medical issues fall into that category.  But not mine.

I think I need the brilliant-but-yet-undiscovered guy, a Kurt Cobain type, but still living under the bridge.  But then he wouldn't be a rock star (yet) and so how would I find him?

Maybe vomit on my shoes is the way to go. It might be the price I have to pay. Maybe genius will be scribbled on the wall.

I'll be wearing old shoes to my next doctor appointment.

When old friends let you down

You know the friends I mean. The ones who were there forever. Who supported you no matter what you did (unless they were extremely drunk -but let's not go there). Who held you up through thick and thin.

And who suddenly -without warning give up on you. At the worst possible time.

I am of course speaking about my right leg. (I can think of at least three people who just muttered an obscenity right then!). It never failed me. OK. Once it turfed me down the stairs of the Pink Elephant in front of a guy I fancied rotten. But I never blamed it for that. It was the stairs' fault.

With that single exception, "Righty" was there for me. Even when I drank too much and then negotiated rocky boats, it was there. Holding me up, adjusting for the wind and current and doing the very best it could. No matter the insults I threw at it: 4" stiletto heels, wedges and (God help me) high-heeled sneakers; it stood firm. It never abandoned me, although it would have had ample reason to do so and I wouldn't have blamed it a single bit.

Then years after (most of) the abuse stopped, it started to let me down. It became distant, uncommunicative.  It stopped listening to me. It developed Ideas Of Its Own. 

One of these ideas is to buckle with very little warning. Now, I am hypermobile. My joints move way more than they should. A buckling leg is a bit of a minefield for me because my knee will go backwards nastily, my ankle will subluxate and my hip may dislocate altogether. This is terribly inconvenient if it happens ...well, anywhere really, but particularly on a Manhattan street or in the Stop and Shop (because apparently the "stop" in "Stop and Shop" is purely figurative. One must ALWAYS keep moving in a Stop and Shop).

So I have had to find a new friend. I need the support for those times Righty goes AWOL. I now carry a fold-up cane everywhere I go. When Righty starts to do her own thing, I pull this bad boy out, unleash it, and hobble about my remaining business.

Yes. Some people do look askance at a cane paired with 4" stiletto heels.  But you know, the height of the heels won't make the slightest difference to Righty's cooperation level. But they make *me* feel a lot happier. I hardly see a cane as an excuse to look frumpy.  Plus the pointy toes help to keep the bones of my feet together (most people don't realize this, but the the bones of the Connectively Impaired will spread out under the load of one's body weight. This hurts.).

I don't know why Righty has chosen to act so. It is one of the Great Mysteries (along with the seizures, the gradual loss of the use of my hands, the vision problems and many other odd symptoms) that no doctor so far has managed to adequately explain. It is one of the reasons why I continue to seek an answer and a treatment, despite so many dead ends. Because I deserve friends who will support me. I deserve hands that will work and eyes that see. I dont; see why I should accept this gradual deterioration.

I don't see why I should permanently be

One Sick Mother    

Re-count!

I am seeing my endocrinologist tomorrow. I wasn't sure what number he is in the greater scheme of things, so I made myself a list of all my doctors in numerical order. I was wrong about having seen 22 doctors to date. The number is actually higher. I have gone to visit 24 specialists on this stupid journey -the vast majority in the past two years. That is not counting ERs and hospitalizations.

So the new doctor next week will be #25, not #23.

That's just depressing.

Anyhoo, Back to the original point: The endo. is Dr. #10, and I have kept seeing him because he did actually identify that I have a metabolic disorder (reactive hypoglycemia). I had thought maybe hypoglycemia was the answer -that my seizures were happening because of low blood sugar. However, I test my blood sugar now and found the answer is no. My worst symptoms have happened when my blood sugar numbers are just fine.

So I amassed (yet) another diagnosis and a bunch of dietary restrictions (no chocolate!)  with still no resolution to my main problem. That has happened to me quite a bit...

One Sick Mother

Why Start Now?

It's a good question. 

I have been trying to get my health and life back for seventeen months and three days. I should have started this record back when this nightmare first began. I would have had so much material by now! I could have regaled you all with stories of the ER visits, the hospitalizations, the tests, the drugs, the side effects, the various obscure specialists and varied wild, weird and wonderful patients I have met along the way. Because it has been a wild ride to date. By starting so late, I have missed the boat on a lot of the excitement. Most of my best stories are now in the past.

I am now close to a real diagnosis, a workable treatment and a means to reclaim my life and career. There will be very little to write about now that I am close to a diagnosis.

But I thought that 17 months and three days ago. That's why I didn't start this blog then. It's why I didn't start a year ago or six months ago. All this time I thought I was close to a diagnosis.  I thought the next specialist would have the answer. That the next round of tests would be the last round. I was eternally hopeful that an answer was just a few short weeks away.

...for seventeen months and three days.

I have given up on that hope now. Not that I have given up hope altogether. I have just given up hope that the next specialist will hold the answer. The next specialist will be doctor #23. I will see him next week. He will probably almost-but-not-quite find something, refer me to #24 and so we will go on...

It's a wonder I keep up.

You know, maybe now that I have decided #23 won't be able to help me, he probably will. But I had such high hopes for #22, "a rock star of electrophysiology" (I know), and after one disasterous test, one hospitalization and another very painful test, he was ultimately a huge disappointment.

So I have stopped hoping each time I see a new doctor. There isn't any point. I guess I am probably in this for the long haul. Because I have rare conditions, and unusual symptoms. Because my physiology is not quite "normal". Because doctors understand horses and I am a zebra.

Yep. I'm a zebra amongst horses. Maybe I should see a veterinarian. 

That's an idea...

I'll hold off on it until after  meet #23, which is next week. In the meantime, I remain...

One Sick Mother