Does it bother anyone else

['miracles' hubby]

I don't voluntarily offer up information about my condition anymore. I too have had a few people give me a frightened high brow when mentioning AI. Having a cochlear BAHA I get a lot of questions. If I must explain my condition; I simply tell people that I have a rare form of Vasculitis. Wegeners GPA. That usually satisfies their curiosity.

A lot of times in stressing how bad it is for us, my wife will be trying to explain what is going on and, well I have a sister who is a nurse practitioner, and she often makes comments that my wife is exaggerating how bad it is, or she is attention seeking... It is a constant battle for me being between the two of them. Because my sister just doesn't understand, I mean sure she understands what the disease is and how it affects the body, but she doesn't understand how it FEELS!


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[me2]

That is so great miracleshubby that you are sensitive enough to try and understand how bad this illness can affect someones life and how difficult it can be just to function at times. I have found most often that most medical professionals profoundly mis-understand how debilitating this illness is. They didn't know me as a person who worked 80 hours a week, they didn't know me as a person who climbed mountains, they didn't know me as a martial artist , they don't know how tough I am and what it means for me to say I am in pain and can't function.
After being blown off as a complainer , whiner and attention seeker it takes its toll on the mind and spirit.

I hope you know what a incredible blessing you are as an advocate , as someone who believes in your wife , as someone who will step in when necessary and set people straight.

Most people will never in their lives experience chronic, life threatening , debilitating illness like this and so they have nothing to compare it to. Very few people without experience have the depth of compassion and willingness to try and understand that you do. Thanks for being there.

[miracleshappen08]

Me2, I'm very glad for my husband!! He has been the biggest blessing to me! He does understand in the fact that he has had to sit by my bedside at the hospital knowing that I may never come out of a coma. My surgery last year, I went into it with both of us knowing that I only had a 30% to live. And I went to the doctor yesterday to find out that the WG is eating the bone in my face. They don't know if they can stop it and if it continues it will eat through my inner ear and in to my brain. It has already eaten through part of my eye socket.

[annekat]

Me2, I'm very glad for my husband!! He has been the biggest blessing to me! He does understand in the fact that he has had to sit by my bedside at the hospital knowing that I may never come out of a coma. My surgery last year, I went into it with both of us knowing that I only had a 30% to live. And I went to the doctor yesterday to find out that the WG is eating the bone in my face. They don't know if they can stop it and if it continues it will eat through my inner ear and in to my brain. It has already eaten through part of my eye socket.

If your disease is under control with meds (which I don't know if it is or not), it should stop "eating away" at things, I'd think. Your recent posts have caught my attention because I, too, have had the obliteration of the septum, turbinates, and the thin bones in the nasal cavity that used to separate it from the sinuses. And I, too, have had some erosion of the bones in the orbital socket, the ones that separate them from what used to be the maxillary sinuses and are now the common cavity. For me, this causes double vision, due to the support of the eyeballs being undermined and them not working well together when focusing. My ENT showed me the images from the MRI. I asked him if he thought it would get worse, and he said no. But I don't know how he could know, really. The good news is that my latest blood work showed my inflammation level to be completely normal for the first time, probably, since I've had this crappy disease. So, there is not currently a lot of disease activity taking place. I wish the same for you. And nice to see your sweet hubby on here.... I hope he continues to chime in whenever he feels like it.

[miracleshappen08]

Yeah... This is the hard part for me and the doctors. My blood is coming fine, but the disease is still very active. I have been on MTX for years now and have had RTX. So I'm not sure what the next step is. But the pain sucks so bad!!!

[annekat]

Yeah... This is the hard part for me and the doctors. My blood is coming fine, but the disease is still very active. I have been on MTX for years now and have had RTX. So I'm not sure what the next step is. But the pain sucks so bad!!!

This is so unfortunate, and I'm so sorry about the pain. I think I've already said this on here, probably to you, but I asked my ENT why is it that other people with sinus destruction and common nasal cavities are having a lot of pain and I'm having none at all. He said it is because the tissues in there are all healed, and he says he sees no likelihood of problems for me in the future because there are no sinus pockets for infections to collect in. But if the disease is still active, which could be more so with me in the future, then I'd guess there'd be granulomas in there cutting off the blood and oxygen supply, chewing things up and causing tissue death, obstructions, and pain. So I am not assuming that I am out of the woods. But it seems so unfair that people who've had Wegs a lot longer than I are still feeling that pain on a daily basis when I'm not, and in fact, have never felt any pain in the sinus and nose area to speak of. But who ever said that Wegs was fair? Best wishes for improvement for you.

[me2]

I have had sinus involvement since way back when and I believe I have even had slight septum involvement at times
( but no direct evidence of it, just a strange sensation) so I cannot say I have been through exactly what your are going through. It does make me wonder though (forgive me if you have talked about this elsewhere) if you are on a strong antibiotic rinse and the steroid rinse of budesonide?

I don't know that this treats what you have exactly but in my case this combination was helpful with controlling inflammation and infection in my sinuses. If I remember right sinus and septum problems seem to come and go independently of the rest of the disease- rather mysteriously. What I do know is there is correlation between staph in the sinuses and regular disease activity.

If it were me , I would think it would be worth a shot to keep up a strict regiment of these two things in the hopes it would help. I think the risks are very minimal.