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. :hug1:

[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.

[Lilly]

Wow Anne, that is so true! It's like we are the "un-knowns"! I guess because of the rarity of it. But, like u said, sometimes even family members fail to realize what we r going thru, just because we push ourselves so we can have some "good" days. Then they forget.....
I am very fortunate that my family is all very protective of me, even my 3 sisters. Prob because I have had it so long and had so many surgeries, and medical "scares" along my journey. I'm very thankful. But I don't have many true friends who understand , and NO person I date understands. So I think I will not even try to have a boyfriend. I just want to b happy, and I like doing things for others. But I just take it one day at a time! :)

[annekat]

Good attitude, Lilly, although you shouldn't give up on having a boyfriend. Just don't expect every guy you date to get it, which I'm sure you already don't, and maybe someday the "keeper" will come along who does make a real effort to understand and finally gets it. I mean, what is so hard about getting that it is a rare disease which we never asked for and will affect us for life, yet at the same time, there is much potential for recovery from the worst of it, and most of us can still have a full and complete enough life that there is room to share it with another person.

I'm feeling like relatives can be the worst; like vdub said, his close friends and his wife are his "rocks", if that was the term he used, but many of his relatives keep trying to joke around and act like there's nothing different about him, like there's nothing to be concerned about. I don't see my sisters very often, and while they have been great to me and helpful in many ways, I think they still think as long as I "seem OK", then I am, for the most part. One of them admitted to being sort of "in denial" about my Wegener's, and wanted me to tell her which symptoms I had off of a list she ran across on the web. Well, at least she was looking on the web, but I think that is pretty rare; I wish they would check in on the forum once in awhile, if they really want to know about what I have. I've suggested it, but I doubt they have done it. It is clear that your sisters and mom are a lot more attentive and like you say, protective; perhaps this is because you got WG so young and have it for so long. I'm glad you have them!

[Alysia]

So I think I will not even try to have a boyfriend. I just want to b happy, and I like doing things for others. But I just take it one day at a time! :)

Hi Lilly,
don't give up on finding a boyfriend ! you deserved to be loved and you are loveble :thumbup:

[annekat]

Hi Lilly,
don't give up on finding a boyfriend ! you deserved to be loved and you are loveble :thumbup: I agree, and think you will find one when you are not looking too hard. You will stumble upon each other, when you are both living your lives in a meaningful way that involves getting out and being around other people. At least that is my idealistic point of view.

[pberggren1]

Definitely don't give up on finding a good boyfriend Lilly. There are many good fish in the sea.

[Debbie C]

Well Lily,it's Monday...did you call one of your docs ? How are you feeling ? I know I sometimes I have the same feeling of my sinuses draining in my throat,but I haven't had the surgeries you have had so I'm sure it's more scary. Vdub , I don't think I would ask my dr. if I was really,really sick. I don't want to know what he'd say. I'm happy just getting by day by day doing the best I can,if I were to hear that I think a pyscological (sp) thing would go off and say " OH ****, I AM SICK" ,I do agree with the fact that no one has a clue on what we are feeling,we may look fine but some days it's pretty damn hard to look fine when you just want to lay down for awhile.
Lily you are lucky your Mom is so close to you that she will get on this forum to find out more. When my sister sees me on here she just walks by and says "you're going to get a computer butt"....that's the least of my worries !
Hope everyone has a good day tomorrow !!

[mishb]

Lilly, I think I've finally caught up on all of the posts of the last few days and this one has me a little cross at you. :predrage:

I like what you mother has said - get this checked out, one more doctors appointment wont make any difference. Good on you mum :thumbup:
I'm sure you are not too old to get you bottom kicked :flapper:

Seriously, I hope you have been to the doctors now.

You know, a lady at work has just been diagnosed with breast cancer :crying: :crying:. She has had 3 chemo treatments now and she still looks the same as she always has.
On the weekend she shaved her hair off and now wears hats and scarves and now everyone is like - I am so sorry (They never were before because she still looked the same). They stand for her to have a seat on trains etc.........don't get me wrong, this is a good thing and she is very sick and the chemo is really knocking her around, but this was the way that she wanted to get her point out there that she was actually sick.

I like having the "not looking sick" part. :biggrin1:
I don't want to get to the drastic point of shaving my hair off (for example) just to show people that I am really not well........but I guess there are your options, if you really wanted people to see that you were unwell.

Now, get to the doctors and get that cough looked at

[LillysMom]

Lilly is out of minutes on her phone, but she wants you'all to know that she is having a chest x-ray tomorrow to see if anything is going on with that. The 22nd her data minutes start over. She is looking forward to being on the Weg site again. She misses her Weggie friends!
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[Debbie C]

Tell her we miss her too and and will pray every thing is clear on the x-ray. Let us know what they find out when you can.

[pberggren1]

Does Lilly have access to a computer or internet? I have an idea floating around in my head.

[Alysia]

I have an idea floating around in my head.
can I be curious... ?

good luck lilly on your x-ray. I send you my prayers. please update us.

[pberggren1]

You can be curious but I want to know Lilly's internet and computer situation first.

[Lilly]

Well, All my awsome Weggie friends.....I went to the Dr. yesterday,,,, My rheumatologist. I flat out told his nurse the day before, that I was worried about my lungs, I was wheezing and my lungs sounded weird sometimes at nite, and I was afraid something may be going on. I was chocking sometimes when I swallowed, and I had just gotten over a bout with shingles. So.......after I took a breather, she quickly said I could come in the next day. So that was yesterday. CXR looks Totally clear!! No funny sounds in my chest. Yay!!!!! My doctor told me that that the way I describe the sounds my chest makes, it could easily be my throat~I should ask my EENT to look down my throat with a scope when I go for my post surg sinus checkup, and just ask him to look down as far as he can into my throat. See if there is anything that could make me have that wheezing off and on at night. Soooooo.......He is even thinking about not keep doing the rituxan every 6 months. He drew blood work yesterday, and depending on how that turns out, and the results from my EENT visit, he will decide. Well, it goes to show me that sometimes I become a bit of a coward before I push myself to the doctor, but I feel so much better now! I am going to continue my walking and good eating habits to lose some weaght, about 15 lbs. I have just been eating too much because I have been scared about my chest. Boy! That weight gets on Quick!!!!!! But I have already started waking and doing the olliptical machine. Its better for my "bionic" knee. (they seem to have about a 20 year life span, so I try to treat mine gently) But other than that......I am very fortunate for this good news. I pray that anyone that is afraid to get things checked out, go ahead and get it done! I am talking to myself too!!!!! Love yall!!! Thanks for every kind words and encouraging words, and tough words.....I need them ALL!!!!! I am a bit stubborn :) heehee! I will b in touch. I will be going back to my house tonite, but on the 22nd my Data minutes start over, so I will be back online on my phone. And I will b over here at Moms too so I can keep in touch. Thank you for the information on the "dialation" Phil. My Mom told me what that was. Is is painful (or should I say... is it very painful?) I may be looking at that when I go to my EENT about those weird sounds in my throat! I can defitately handle pain.
Well, bye for now all. I will be in touch soon, and as always, thank you for your support!

[Lilly]

Hi Phil, I come to My Moms house and use her computer. I myself, Have an I phone 3. I have a data plan, so I can use it at home until I get close on my minutes going overl Then the phone company tell me im getting close, and if I go over, they give me more minutes,,,,,but charge me an extra $15. So I try not to do that ! lol But my family is keeping a eye and ear out for a computer for me. S0 it shouldnt be too long until I have SOMETHING!!! :) But since my Divorce, I do not own a credit card, I do not do "loans".....everything I have is MINE. It may not be a lot! But its all MINE!!! And I am blessed to have It! Thats just me. My X-husband kept us in the hole, and it stressed me out soooo much, that I dont care if I dont have all the new things coming outl I have exactly what I need! :) Thanks for letting me bend your ear !

[Debbie C]

Lily,glad to hear your x-ray came back good.:biggrin1:You aren't supposed to see your ent for awhile yet right..I don't remember when you said. Maybe you can get the appt. pushed up if you tell them what's happening.
That would be nice if you didn't need to do the rtx, I figure the less you have to do the better.Take care and keep us posted when you can

[annekat]

Good idea seeing the ENT, maybe sooner than later. But keep in mind the coughing could be a minor thing, now that your CXR came back clean. My coughing sounds awful lately, and I'm doing a lot of it, because my windpipe is aggravated by the colder weather, either damp or dry. It gets worse toward the end of the day. But I still think it's just stuff dripping down from my sinuses and collecting in my bronchii until I manage to cough it out of there. What I cough up is usually a very small amount and brings relief. This may or may not be the same scenario you have, there are so many scenarios in Wegs!

[pberggren1]

Hi Lilly, the dilations are not painful at all. A bit of discomfort after the procedures but nothing major at all. I'm glad to hear your family is trying to get you a computer and you can use your moms a lot as well. Keep us updated on your breathing. Does it ever seem tight to you? Like, do you get short of breath after going up stairs?

[windchime]

Hi Lily, I'm glad your chest is clear and you are getting better. I had a whistle when I was breathing a couple of weeks ago. It drove the pulm dr nuts until he figured it out. The back of my throat was swollen because of post nasal drip. This caused the uvula (sp?) the thing that hangs down the back of your throat to swell. So between my tonsils roots, the enlarged uvula, and irritated throat I had this whistle. His notes called it pharyngeal stenosis. The whistle is gone this week so I'm happy. Keep healing and I love your positive attitude. :thumbsup:

[annekat]

Cindy, some of my breathing stuff stumped my ENT, too. I may have had a whistle at times. I was having a lot of problems around my larynx/pharynx (forget which is which), and he couldn't understand why I sounded asthmatic when I breathed through my mouth but not when I breathed through my nose. It seemed simple enough to me; the air flowed differently over the area depending on the direction and route it was coming from. He did do a scope, and I think it was mainly just extra thick mucus all throughout the area. My voice was just awful during that time; I could barely talk. I haven't had any of that exact scenario since WG treatment, though the excess mucus still causes problems and I imagine it always will.

[windchime]

Cindy, some of my breathing stuff stumped my ENT, too. I may have had a whistle at times. I was having a lot of problems around my larynx/pharynx (forget which is which), and he couldn't understand why I sounded asthmatic when I breathed through my mouth but not when I breathed through my nose. It seemed simple enough to me; the air flowed differently over the area depending on the direction and route it was coming from. He did do a scope, and I think it was mainly just extra thick mucus all throughout the area. My voice was just awful during that time; I could barely talk. I haven't had any of that exact scenario since WG treatment, though the excess mucus still causes problems and I imagine it always will.


Gotta love all that excess goo traveling down the back of your throat into your lungs. :ohmy:

[Lilly]

Hi to all my friends, I am at my parents tonite and tomorrow, so I will be on here and see how everyone is doing. I am so sorry to admit that there is one friend on here that has been very interested in my 2 nose reconstructions......I have looked and cannot find out who it is!!! :( I just wanted to let her know that I will be glad to share that while I am here for the next couple of days. Things have been a bit rough, you know, we all have tough times. With this disease, and with life in general! Well Both have gotten me down at the same time! So I am glad for the positive feelings I get from all of you.....:) I will be in touch. I am going to visit my sisiters and neice and nephews for a little while. I feel terrible, but I am going to push myself because I am not going to let this dz keep me away from my family. I dont have to stay long, and its just right down the street! So I going! SO THERE!!!.....Wegeners Granulomatosis! You cant keep me from doing what I want! U can make me feel bad, But I can still go if I Push myself! And thats what Im about to do!!!!! Oh dear! I am talking to my disease!!!! lol........:) Bye for now, my friends! Talk to you later tonite....

[Dirty Don]

as long as the disease does not answer you back, you're OK...have fun!

[Debbie C]

Hi Lily,glad to hear from you and sorry you are going through a rough time right now but it is good to have your family and us around you!!!!! Glad the xray came back good,whats the next move for you now ?