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

[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

[annekat]

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

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.

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

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

You know, a lady at work has just been diagnosed with breast cancer . 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.
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.