UPDATE:
TLC 9PM SUNDAY, "Mystery Diagnosis" - "The Girl Who Couldn't Cry" Episode about a woman who had Sjogren's symptoms for 50 years before being diagnosed!I guess the meaning of the words "you're going to be okay" are relative to the situation. Take the episode of "House" that I saw Tuesday night, for example.
I recently began watching the show because, 1) I have so much "free" time that I've pretty much seen everything there is to see on television, and if I haven't, I'll get around to it, and 2) "House" is often on in reruns almost every single night and was having a 2 week marathon recently as well. I remember watching it when it premiered but like many other shows, it was in a time slot that I kept forgetting about. I know it's a popular show, but honestly, after watching roughly 3 season's worth of episodes, I really can't see why it has the kind of popularity that it does, and I fear that there might be people out there deluding themselves into believing that they know something, (or anything,) about medicine from watching the ridiculousness that passes for differential diagnostics on that show! If I thought that was the way REAL medical staff treated patients, I'd never set foot in a hospital or doctor's office.
But I digress...
Back to the episode to which I'm referring in this post- it was called "Lucky 13." It focused on a young woman who had the usual plethora of health issues and near-death experiences once she was admitted under "Dr. House's" care. This was probably the most insane medical plotline of all the ones I've seen, and I know whereof I speak in this particular case, because this year, I happen to be going through the same diagnosis that the "patient" on that episode ultimately got.
After having a tonic-clonic seizure, a bone-marrow biopsy, aplastic anemia, heart failure on the operating table because of a breathing problem, lung cysts, (one of which burst when they inexplicably put the still-recovering-from-kidney-surgery patient on a TREADMILL!!) not to mention the calcification of the renal tubes that sent her into that surgery in the first place and a second surgery to remove the lung cysts, and THEN she later develops aplastic anemia, all in the span of, what, less than one week? Then, they jerk her around and perform useless test after useless test then tell her that she has L.A.M. and is DYING.
Sounds like a pretty bad time this poor woman is going through, huh? Oh, but wait, "Dr. House" "saves" the day for her in the end! 13's cracked lips make him think of the one diagnosis he should have thought of back when they realized she had RTA. So what does he do to diagnose this? He takes an onion into her room, cuts it and sees that, like with me, it doesn't make HER cry, either, and VOILA! "You have Sjogren's!" He exclaims. "You're going to be OKAY!" says 13. And the day is saved!
Hurray, HOW lucky is SHE? She "just" has a lifelong autoimmune disease that has no cure and was the cause of all that shit that PUT HER IN THE HOSPITAL in the FIRST PLACE. And HOW does "Dr. House" know for SURE that it's Sjogren's? He doesn't. A person CAN have "dry eye" syndrome, which has NOTHING to do with an autoimmune disorder. THAT'S why there are a MULTITUDE of tests that the doctors do and/or many various symptoms that a person must have together in order to be diagnosed. I find it hysterical that they did a painful bone marrow biopsy without batting an eye but couldn't be bothered to do the lip biopsy to CONFIRM the presence of the lymphocytes attacking the minor salivary glands, and that this was perhaps one of the few episodes where LUPUS might actually BE the diagnosis, because it or other autuimmune disease like Rheumatoid arthritis, etc., often coincide WITH Sjogren's, yet they didn't do a Sed rate or an ANA or an RF blood test.
There wasn't even any mention of the salivary glands except to say "dry mouth," let along any tests of saliva flow or a Schirmer's for tear measurement. And if her tear glands are bad enough that she can't cry, I can tell you from experience that she CAN'T SEE very well, either, because it really fucks with your vision. No two days are alike.
But, according to "Dr. House," all she has to do is take some methotrexate and some eye drops. Forget that all the people I know in the Sjogren's support group online are taking and using no less than half a DOZEN different medications and products to manage the disease, such as Salagen, Predisone, Exovac and Plaquenil.
I, myself, am now starting to stock up on things I can't do without, like the "special" toothpaste and mouthwash my dentist gave me because having Sjogren's also means, at best, you can expect to start getting more cavities and at worst, you can loose your teeth altogether! We take our saliva and it's functions for granted, but it has enzymes that keep the bacteria at bay as well as things like candida, (something they, of course, DID mention on the show, probably because of the titillation factor, they almost made it sound like "Spencer" GAVE candida to "13" from kissing her!)
I used to keep my contact saline solution close by all the time at home, before I even knew I had "dry eyes" or Sjogren's, and little by little, it's gotten so much worse that I've had to get more lubricating drops, the "oily" kind that last longer, otherwise I have a really hard time seeing. There were a few days last month when I even lost my ability to produce tears at all, e.g. cry, even when I watched a sad movie, etc., I couldn't do it at all, but it comes and goes. The other thing that's weird about the condition is that sometimes, mainly outside, my eyes would just STREAM water down my face uncontrollably. They try to make up for the fact that the tear glands are not working correctly and are not producing QUALITY tears, so they just turn on the waterworks in an effort to keep the eyes wet enough. Then there's the "fun" of waking up with them crusted shut every morning.
My skin is even drier than ever now, too, so I slather unrefined pure shea butter on it, especially my face and hands, a few times a day. I've always worn lipstick pretty much all of the time, but now, my lips feel tight and dry even with it on so I'm always re-applying gooey lipgloss. My bottom lip is even tighter since the lip biopsy, which doesn't help. The worst part about that was that pathology said there weren't even any minor salivary glands IN the salivary gland tissue, which, if you know how autoimmune diseases work and follow it to its logical conclusion, will tell you that when something, in this case, the salivary glands, are attacked by lymphocytes long enough, the thing that's being attacked is going to degenerate...I don't know how long I've had this, but looking back, now that I realize what the symptoms are, I know that it explains a lot of things I've had going on for years, (though the symptoms of my other issues overlap with this in a few instances.)
But for me, the first symptom, the one that bought me the diagnosis in the first place, are my chronically enlarged and/or swollen parotid and sometimes even my submandibular salivary glands. The parotid glands were what drove me to the ENT. I'd had 2 separate bouts of "the mumps" last year and the parotid glands, at the corner of the jaw, just under the ear, (and in front of it on the side of the face, too,) got firm and stayed that way for months, and still are. There are less than a handful of things that can cause that, so I guess that's why they didn't have the patient present with that as a symptom on "House," because then they wouldn't have had much of a show without those differentials.
Now, every time I get even a common cold, like I had over the holidays, I swell up and look like I have the mumps! It's hideous.
*See photo!Here I am at the end of December, with my "mumps." I look like I've gained 40 lbs. judging by my face!
Luckily, the swelling's gone down a lot, but not completely- it never does anymore, so I have a fatter face than ever!
As mentioned on "House," there can be complications from Sjogren's, but "Dr. House" didn't bother explaining why. Sjogren's DOESN'T JUST affect saliva and eyes. It affects the whole body and anything in the body that produces fluid of any kind is targeted. Joints are often affected, for one. I have a lot of joint problems. That is to say, a lot of them hurt and often. The fluid that protects the cartilege is affected.
I had to have an endoscopy 2 months ago and found that I have gastritis. Unlike with many people, mine is not from the usual causes, the main one being H.Pylori bacteria. Sjogren's can cause this, too, for one of two reasons, and it is yet to be determined which is the cause in my case. The lack of saliva and/or lack of "good" saliva leads to digestion problems of all kinds with Sjogren's, for one. Saliva plays a role in helping digest the food when it's on its way down. Without it, the food hits the stomach as is and the stomach has to do ALL the work. The result is too much acid, or in the case of someone with Sjogren's, not enough of THAT, either.
The other cause of gastritis could be the beginning of a process that will lead to pernicious anemia and vitamin B12 deficiency. In that case, the stomach cells are being attacked by the autoimmune system because of the disease and they will eventually lose their ability to absorb B12, leading to pernicious anemia. Whether its that remains to be seen. I've got a battery of blood tests ahead of me as it is.
I do have one major thing in common with the patient on "House." We both have been EXTREMELY EXHAUSTED these days. Like nothing I've ever known. Some days better than others. It's odd for me, because I was used to having a ton of energy my whole life, and now there are times when I fall asleep on the couch for no reason and times when I just CAN'T get up off of it to do ANYTHING.
As if all of this weren't enough, this isn't the end of the symptoms. There's a pretty good chance that I'm getting worse. Why do I say that? Because 2008 was a hellish year for me, phyically. I had more new things go wrong with me last year and more weird, unexplained things, like losing 1/3 of my eyelashes on both eyes one time, like when my lips swelled up and blistered really badly after I'd been out riding my bike in 95+ degrees, like the weird little painful and/or itchy bumps I get on my arm or legs, like the sudden, unexplained 10 lbs. I put on in the past 2 months, like the way my eye sockets and lips are swollen when I wake up as often as not, and like the way my stomach feels like there's something pushing outward on it from the inside, and those are just a few of the things I've been dealing with!
It also turns out that thyroid problems often accompany autoimmune disorders- a lot of people with Sjogren's have hypothyroid, and since I have EVERY SINGLE SYMPTOM of that, too, now, I have to get tested for it.
Anyway, aside from all of that stuff, and the possible complications if I develop kidney, lung or nervous system problems, (among other possibilities, AND, not to mention that people with Sjogren's have a greater risk of lymphoma,) I guess, like they said on "House," I'm "going to be okay."
Side Note about "House"- I can't understand why they used such a cool song as Massive Attack's "Teardrop" for the opening credits, it doesn't fit the show at all.