I'm coughing a lot but afraid to go get it checked out! 😢

[Lilly]

You would think that having this dz for so long, I would b used to getting things checked out. But lately, I've had a cough that feels like I'm coughing on the normal fluids your mouth makes, like instead of going down my throat, it chokes me and I cough! All the time! I am always afraid that with all the scarring in my throat, along with the active lesions in my sinus cavity that have to b cleaned out and removed in my EENT's office (who is really a great guy, with what he gets out of my nose is soooo embarrassing! And he makes me feel like it's no big deal! ) But constantly having open lesions, coughing up throat scabbing (sorry, gross) every day. That just can't b good.....honestly, I am afraid of cancer. It prob sounds silly, but once you get something like wegeners, and u realize you aren't invincible...other things creep into your mind.....the "what ifs". I just feel helpless and scared sometimes, and having it for so long makes me afraid of how long can my body take this? I guess I'm just having a bad day, but I have to go to get my second check up from my surg I had 12/24....and I'm looking for a new pain dr (long story) it just seems like it's always something. I just get so tired of this dz sometimes....sorry to b so negative. I just needed to talk. 😔

[brettgrant99]

I don't see any negativity, I see honesty (oh, you mentioned that ). I'm constantly having "what if scenarios." I've just been diagnosed, Dec 17th, 2013, a day that will be in infamy for the rest of my life. All of this is very new to me, but I worry about those things, too. Well, not about EENTs, I don't have one of those yet. I believe that in a small way, I am fortunate, as they figured out what was going on so quickly. But I am not on any treatment except prednisone, so I worry about these little things turning into big things. I totally get not wanting yet another doctor visit. I went from having one doctor to four in the space of about 2 weeks, with promises of needed even more.

Twice in the last week, my wife has told me she thinks she is getting sick with a cold. Like I need a cold on top of everything else. Ahhhhhhhh. It never ends. I sit in the various Doctors' offices and wonder, am I sicker than that person over there? Closer to death then them. I look just fine outside (except for the purpera, bloodshot eyes, etc), boy, they look awful. But who is really sicker? And now I am awake all of the time. With lots of time to think about it. Very hard to turn off my mind. I never thought that only getting 4 hours a sleep a day would be a curse. Now I have all of the time in the world and wish I was busier. Oh well.

I don't think that you are being negative. Don't keep it bottled up. Let the talking flow.

[windchime]

Ah Lilly I think you are experiencing the highs and lows of this disease. Sinus drainage down your throat and into your lungs can make you cough. It happens to me all the time as I can't seem to get my sinuses to 'turn off.' With that being said you should still let your doc know about anything new that pops up as it could be an indication of a flare or further involvement of the disease. I know you have been dealing with this disease for a long time and have been through hell and back, but don't give up. You are strong and you WILL get through this. Venting on here is okay, it isn't viewed as negativity. I don't think you were negative in any event. Feel better.

[Allisonquast]

I'm the caregiver and I wake up at four am not being able to sleep too. The mind starts and oh the places it goes! I agree. Keep talking everyone. I

[LillysMom]

Yes you should get this checked out, and soon. One more Dr. appt. won't make any difference!
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[drz]

Until you better understand your GPA and how it affects your body, it is better to report any symptoms to a doctor you trust. The doctors can't address your treatment needs if they don't know what is going on with your body. The good GPA experts rely heavily on patient's self report of how they feel. Their explanations of what is happening and what needs to be done is very important in maintaining your peace of mind and confidence in your treatment team. It will also help you learn what symptoms require quick action and which ones you may have to learn to live with as residual effects of your GPA.

[Lilly]

You are all so right....and you know what? Every time I have an issue that pops up like this, and I am "gun shy" and just want to ignore it and hope it will go away....I eventually have to face it! And if I just make that call and sched the appt, and really just take control of the situation, it gives me strength. It is what it is.....and putting it off is only causing me stress, and stress is not good for this disease! So when I have (in the past) just taken the bull by the horns and sat down w/my Dr, and just give it to him/her straight.....Dr.V. Nice, I have a cough, and I wheeze at nite. I'm afraid I may have pneumonia, or a trachea problem, and I feel I need a CT scan to look at my lungs. Ive got a bit of shortness of breath, and I am honestly worried. What do u think? ........... Yes, I have done that in the past and when my CT is "unchanged", ahhhhh.......it feels so good to have that peace of mind! Well, I guess I will make my appt Monday, and see when they can see me.....hmmm which dr do I choose? �� PCP? Rheumatologist? Pulmonary? I have so many to choose from! Lol! �� well, I guess I'm just trying to give myself a little pep talk. Glad I have some people to share with, so I don't feel so alone! Thanks all who felt like listening! And thank u sooo very much for all your support. Boy what a difference it is making for me already~ ❤️����

[vdub]

am I sicker than that person over there? Closer to death then them. I look just fine outside (except for the purpera, bloodshot eyes, etc), boy, they look awful. But who is really sicker?

Absolutely all of us have gone through this phase.... Actually, I don't know if it's a phase at all -- I'm beginning to think it's permanent. It is so maddening to tell people you have a bad disease, it's incurable, and you feel like crap and they respond with "but you are looking terrific". Sheeezee, most of us have pot guts, moon faces, back humps, we make funny agonizing noises when we get out of a chair or car, and we blow our nose or clear our throat a lot.

I actually had a sister-in-law telling people "oh, it's not a big deal, he'll be fine".... Sheeezee! she barely made it out of high school, I seriously doubt she knows anything about it, but somehow she felt qualified to tell anyone who would listen that "it wasn't a big deal".

I've had this disease (and the others) for 4 years and, yet, I felt compelled to ask my PCP the other day "am I really, really, no kidding sick". I get so many people telling me I don't look sick and I do manage to walk around ok for short distances, but then I collapse and have to take a nap. He assured me that I was really, really sick.

I have gotten to the point where I just don't want to be around people. Groups greater than 6 make me nervous and I can't hear their conversations due to hearing loss anyway. And many of my relatives of my age are still for some reason in the shuck'n and jiv'n jok'n mode and I have gone way beyond that. I don't have fun anymore -- instead I am serious about most everything, most comments, most discussions and most conversations. There's no joking with me anymore, so I stay away. Relatives are the worst -- they remember the old vdub and don't realize the dramatic change that has taken place, so I stay away....

My relatives are the worst to be around. All my close friends fully understand and fully appreciate what has happened. They, along with my wife, are my rocks. At this point, I am closer to my life long friends than I am to my family (excluding wife and kids of course). My wife isn't just a rock, she's a huge boulder -- I'm not sure what I'd do without her.

Anyway, I kind of digressed, but maybe it will help you understand what's going on with you.

[Lilly]

My oh my.....how many times have I asked one of my doctors.....how can I b so sick, but people say I look great! Well, you take care of yourself, and have a positive attitude! Well, yes. But that can b a double edged sword! How can people understand how sick I really am if I strive to be as well and healthy as possible while my body is fighting a war with itself on the inside!!! Sometimes u just gotta laugh....and I don't even try to explain my illness to people who don't know it anymore! I just say it's a rare autoimmune dz. called wegeners dz. and it's a complicated dz. you can look it up.....but it's very difficult to explain. And when they say "but you don't even look sick!" I tell them to look that up too! For real, it will explain a lot too! You can't blame them if u are not having any outward symptoms....so I just try to b nice. It can b frustrating though.

[annekat]

I wonder if they remember that most of us have known cancer patients or survivors who may or may not be "out of the woods" but in any case are still affected by the disease and the meds and must be very careful. And that many of these victims of cancer go about their daily lives with no outward signs that they are, or have recently been, very sick, and have good and bad days just like us Weggies. For some reason, because people have heard of cancer, they take it seriously, but since they haven't heard of Wegener's, GPA, or vasculitis, they discount the reality or importance of it. It just doesn't sink in, even with relatives who have known us all our lives. To them, we may just seem like our old selves on the rare occasions they see us, and they don't think another thing of it.