You mean I don't have to put a Kia in my mouth?

7:29 PM Posted In , , Edit This 0 Comments »
This afternoon I had an appointment for a consult for my mouth. I was on pins and needles, here's why. This saga has been going on since November, that's right, November! Insurance wouldn't cover me to see a specialist, so I had to go down to the dental clinic at MCV. Gah, what a scary experience! If I absolutely could not afford dental work, I would go there. But would I want to get parts of my mouth grafted? Probably not. Was I about to? Yes. Anyway, my dentist finally decided to file a claim with my insurance saying I would benefit from seeing a specialist. Insurance approved the visit, I got an appointment, and here's how it went.

For the past few months, people have been telling me how horrible my mouth is. Yeah, thanks, I really needed to feel more self conscious about it. I have impeccable dental care and I feel as if part of this is my fault even though it's not. Part of it is the Lupus, part of it is genetics, and part of happened because of everything my mouth endured with orthodontics. Oh and for those of you who are saying Lupus is genetic, technically it can be but mine was more than likely caused by the Epstein Barr virus. Anyway, the specialist said my mouth was not as bad as I thought it was, that technically I could benefit from one graft, but my case isn't severe enough for insurance to cover it. As long as I keep up with my impeccable dental care, I will probably be OK for another few years, possibly the rest of my life. But, I still need crowns and sealants and some old dental work to be touched up.

Technically it's good that I don't "need" grafts. The doctor said I could certainly benefit from one because of my thinning tissue. But it's not enough for insurance to want to cover it, they would deny my request in a heart beat. It's a bad thing that I could benefit having my mouth grafted but it's not quite bad enough. It's a sort of damned if I do, damned if I don't situation. But at least I got another opinion, at least he was up front and honest with me, and at least if things get worse, I can get a graft done.

Here's what kind of bothers me about this doctor. He was asking me if I got the typical subcutaneous lesions, I get them on the inside of my mouth and nose. He asked me if I got them anywhere else, which for now, I don't. He then went on saying that if you have them in your mouth then you should be having them elsewhere. He also said that I don't have the typical lupus rash and I explained to him that I am photosensitive and the rash will only happen during a flare or if I am exposed to UV rays unprotected. He said that could be sunburn, I said most people don't get sunburned in under three minutes. I think I will have this problem my whole life, people think that if you have Lupus, you have the rash. Not everyone gets the rash though, you can have Lupus without the rashes. It's a very individualized disease and my case of Lupus is not the same as another person's case.

Oh and the next time I get the lesions on the inside of my mouth, he wants me to come in so he can take pictures. Yes, because I want to go across the rivah so I can get pictures taken of the inside of my mouth. Is it for my chart? Probably not. Will he try to submit the photos to a medical magazine with an article, I have a feeling he will. Seriously, if you want to see pictures of lesions and ulcers inside a person's mouth when they have Lupus, Google it already. I know I sound really mean but I could be doing better things with my time than having pictures taken of my mouth. I just get so frustrated when a doctor, or person in general, thinks they know any and everything about Lupus when they don't. For now, the only two people who should be focused on my Lupus care are my rheumatologist and my internist. Unless you are one of those two people, your opinion about "What you've heard about Lupus" probably isn't good enough.

I went walking this morning and I was just able to track my distance, I walked 1.872 miles today, not quite 2 miles. Tomorrow I'm definitely adding some length to my route to make sure I hit the two mile mark! Plus it shouldn't be as cold tomorrow as it was today. I walked, got my mouth investigated, no brand new Kia needed, probably only a used Kia, got an unnecessary schpeel about Lupus, and now I'm exhausted. Is it bedtime yet?

Loverly Lupie Me