WARNING!

WARNING! THIS SITE HAS PICTURES AND CONTENT OF A MEDICAL NATURE AND MAY NOT BE SUITABLE FOR EVERYONE. VIEW AT YOUR OWN DISCRETION.

Monday, December 25, 2006

Not Hell, Just Purgatory

Asthma has flared up so bad the last few months that I am now on four different meds. Arthritis keeps on messing me up in the walking category. Sometimes I can walk just fine and then suddenly a stabbing pain will hit me and I cannot help be cry out. Embarrassing! Stomach problems were so bad on a daily basis, I ended up having a nasty episode, similar to a gall bladder attack, or pancreatitis (it has long been removed, and previously had acute panc.) I was about ready to go to the ER, but I hate that! So, I rode it out and next day went to see my Primary (she's an Onc and really understands what's going on with me) so blood tests, Ultrasound ordered and referral to Gastro who has now ordered an MRCP. A few years ago I was told that my tummy problems are GERD, but I think something else is going on.

There's more but I am tired and want to go lie down.

So, though this has not entirely been hell, maybe it is just purgatory.

I have severe Oral Lichen Planus, and I am in a bad flare right now. Complicated by Thrush. A picture is worth a thousand words:

Just a few more


Wishing for Winter to be done with it!





More Christmas Spirit!





Season's Greetings!





Friday, December 22, 2006

Feeling Sorry

My mouth is in bad shape right now. I have a flare up of the Oral Lichen Planus, plus Thrush, too.

It hurts to eat everything.

You would think I would lose some weight with this going on!!!

I'm feeling so sorry for myself.

Saturday, November 4, 2006

In 1971 I had been referred to a specialist who was doing the clinical trial for a cancer I had been dealing with. It involved taking my tumor, mixing it with killed tuberculin bacilli, and Freund's adjuvant. When I mention all this now to medical people their eyes glaze over with the "oh, that BCG stuff" look, and we go on from there. Except for my present oncologist who put two and two together and explained to me that was why I have autoimmune problems. It's a long term after-effect because it taught my body how to fight off the tumor cells, but also now fights my other cells too.

The drawback to having the cancer arrested (not cured) has been the autoimmune disorder. Often misdiagnosed as Lupus until they run the standard tests, then I get told it is "ANA negative" Lupus, and in more recent years, not Lupus at all. I am at the point where I do not care what the diagnosis is, as long as I get adequate treatment. Usually dosing of steroids until things calm down and I can get back to my usual reasonably normal self. As I have aged the episodes are more frequent and more lasting. I am now 61.

Some of the manifestations have been Alopecia Areata, Fevers without any understanding what's causing them, frequent lung infections/bronchitis, increase in allergies to mold, dust mites, smoke of all kinds, housecleaning products, and apparently some plants. I haven't bothered to get further testing on those.

The Lichen Planus of my skin, I can't even remember when it began. About 1979 or earlier are my furthest back memories. Photosensitivity seems to be related. Get me in the sun and a rash breaks out, but then later are the little pimple like sores that don't heal.

The Oral Lichen Planus in my mouth, was diagnosed in 1995. I might have had it earlier but it must not have been noticeable. Who looks that deeply into their mouth when nothing is going on? But, it has increased in the last ten years until it was diagnosed by a specialist as "severe erosive" Lichen Planus. Now, it is a constant battle between LP and Candida now that I am getting appropriate medicine for the LP (Clobetasol).

Because of the immune system being such a problem, I don't take flu shots because every time I do, I get the flu, and subsequent bronchitis or lung infection of some sort, as my doctor calls them. I have had pneumonia more than 14 times.

I have a list of drugs that bestow upon me, unfavorable reactions. Don't know if they are true "allergies" to the drugs. Just have been told by docs not to take them anymore. Penicillin is one. Tetracycline and Beta Blockers increase my lupus-like symptoms intensely.

Bendryl puts me to sleep, and leaves me druggy and grouchy all day, so I have Clarinex and Singulair. I use albuterol for the adult onset asthma and flonase for the sinuses.

I test so positive for tuberculosis now that my whole arm turns purple and swells up, though that is considered a reaction to the trial and no indication of having TB. Still no more TB testing allowed. I have learned that Freund's adjuvant is now forbidden to even use on lab animals because of the skin eruptions it causes. Hmmm.

Underneath all this I have the misfortune of having been exposed to the carcinogenic chemical dump, Love Canal, of Niagara Falls NY. I swam in the creek one mile down river for the first fourteen years of my life.

Inoculation caused autoimmune possibility

In 1971 I had been referred to a specialist who was doing the clinical trial for a cancer I had been dealing with. It involved taking my tumor, mixing it with killed tuberculin bacilli, and Freund's adjuvant. When I mention all this now to medical people their eyes glaze over with the "oh, that BCG stuff" look, and we go on from there. Except for my present oncologist who put two and two together and explained to me that was why I have autoimmune problems. It's a long term after effect because it taught my body how to fight off the tumor cells, but also now fights my other cells too.

The drawback to having the cancer arrested (not cured) has been the autoimmune disorder. Often misdiagnosed as Lupus until they run the standard tests, then I get told it is "ANA negative" Lupus, and in more recent years, not Lupus at all. I am at the point where I do not care what the diagnosis is, as long as I get adequate treatment. Usually dosing of steroids until things calm down and I can get back to my usual reasonably normal self. As I have aged the episodes are more frequent and more lasting. I am now 61.

Some of the manifestations have been Alopecia Areata, Fevers without any understanding what's causing them, frequent lung infections, bronchitis, increase in allergies to mold, dust mites, smoke of all kinds, housecleaning products, and apparently some plants. I haven't bothered to get further testing on those. The Lichen Planus of my skin, I can't even remember when it began. About 1979 or earlier are my furthest back memories. Sun allergies seem to be related. Get me in the sun and a rash breaks out. The Oral Lichen Planus in my mouth, was diagnosed in 1995. I might have had it earlier but it must not have been noticeable. Who looks that deeply into their mouth when nothing is going on? But, it has increased in the last ten years until it was diagnosed by a specialist as "severe erosive" Lichen Planus. Now, it is a constant battle between LP and Candida now that I am getting appropriate medicine for the LP (Clobetasol).

Because of the immune system being such a problem, I don't take flu shots because every time I do, I get the flu, and subsequent bronchitis or lung infection of some sort, as my doctor calls them. I have had pneumonia more than 14 times.

I have a list of drugs that bestow upon me, unfavorable reactions. Don't know if they are true "allergies" to the drugs. Just have been told by docs not to take them anymore. Penicillin is one. Tetracycline and Beta Blockers definitely increase my lupus-like symptoms intensely. Drug induced Lupus, that is called. But, still there are many times when I have the symptoms, without having been on those drugs, or any drugs for that matter.

I test so positive for tuberculosis now that my whole arm turns deep purple and swells up, though that is considered a reaction to the killed tuberculin trial and no indication of having TB. Still no more TB testing allowed. I have learned that Freund's adjuvant is now forbidden to even use on lab animals because of the skin eruptions it causes. Hmmm. I would want to learn if they have OLP!!!

Underneath all this I have the misfortune of having been exposed to the carcinogenic chemical dump, Love Canal, of Niagara Falls NY. I swam in the creek one mile down river for the first fourteen years of my life.

Friday, March 17, 2006

Seeing is Believing

Because I take a lot of photos of my mouth, I am well aware that what I can see with the naked eye, doesn't always get caught by the camera.

Seems like seeing a dentist or oral specialist to have it evaluated might be a consideration. It seems to me that if they see peoples jaws all the time, they would be more likely to notice.

Wednesday, February 1, 2006

I am presently taking Dexamethasone in the form of a mouth rinse.

According to what I have been reading, its potency is about 20-30 times that of hydrocortisone and 4-5 times of prednisone.

But, would absorbing this through the tongue as a liquid be useful at all?

I do not swallow it, but "swish" it.

Saturday, January 14, 2006

Bullous Oral Lichen Planus






The dental surgeon called it Bullous. He is also the one who removed those two front teeth. It's strange because it looks like a blister. Filled with fluid, but it can't be busted like a blister. It just stays there.


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