Lupus Nose

I remember when I was first diagnosed with Crohn’s, every time something weird was happening to me (dull headache, pain in my side, etc) I wondered if it was because of the Crohn’s. And I remember that confusion was paired with a bit of hopelessness, like, if this IS Crohn’s, well crap, I don’t know what to do about it. I didn’t know anyone with Crohn’s, my doctor’s appointments were whirlwinds, and there really weren’t any other resources for me.

I was starting to feel that same way about Lupus. Over the past few months, even before I was diagnosed, I had this strange …I guess you could call it symptom. My nose hurt. It just felt dry, like on the inside, not my sinuses really, but my nostrils. Weird, right? I couldn’t figure it out. In desperation I put bag balm on my nostrils (amazing stuff by the way…seems to fix just about everything) and it helped make me feel better until it finally went away. I mentioned it to my mom who said it was probably because of the dry weather, and I thought myself that maybe I was having some allergies, since it started around the spring/summer. But then it just kept coming back, and then I was diagnosed with Lupus, and it did say something on the list of Lupus symptoms about nose problems, and then I just sort of forgot about it for a bit.

Then last week it started up again, with a vengeance. My nose just hurt really bad. It was bleeding too. I was doing the bag balm thing. So finally I did what anyone in my position would do – I Googled it.  And I learned nothing. I mean seriously, nothing of value came up. So I went to Technorati.com and started looking for Lupus blogs, to see if I could reach out to others with Lupus. But then I started to doubt myself. I just have drug-induced Lupus. Is that really Lupus, or will they seem me as some sort of poser? And what if no one writes back to me? I started feeling pretty hopeless again.

But then – duh – I remembered about the multitude of chat groups. I went to HealingWell.org and posted my question. Within hours, four people wrote back. Unfortunately none of them had an answer for me in terms of how to make it better, but they were all experiencing the same thing, making me feel less alone in it all. Then I went to another site, Ravelry.com, which is actually a site for crafters, but they have chat groups for just about everything. I received several responses there too, but this time with ideas on what I can do about it. One person suggested anbesol, and another suggested Badger Balm.

Solved? Nope. But I know from Crohn’s that this is all just part of the process. It sucks. But what a different experience it’s been this time around. Rather than no resources, or just having to talk to my doctor, I have thousands of people out there just like me, just one computer away.

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3 responses »

  1. the scripts that suppress the immune response affect the nasal membranes and ability to ward off infections of the nose. When the weather gets dry-like in the fall-Now- transmission of infection to the nasal passages is magnified and more common. When I got on methatrexate that was one of the first things I noticed. With the addition of Embrel I am sure it is worse. So…my bones dont hurt so much but my nose is a mess. Hoe-hummm!

  2. Pingback: Retail Therapy « My Stupid Crohn's

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