Anyone ever want to scream?

[NikkiNicole]

There are not many people in this world that understand how I am feeling. With that being said, I am so grateful to all of you and this place because you are the only folks out there who truly get this.

I'm not sick on the outside. Aside from my gnarly neck scar and the prednisone weight gain, I still have a full head of thick hair, am still here at work a million hours a week. The only indicator I seem to have that I feel lousy is my cheeks get bright red. One of my friends pointed this out to me the other day. She can see it in my eyes and my cheeks start flaming. But ... she's a friend of mine so she knows everything and wants to know what's going on.

Others? Yea, not so much. It's the typical reaction to chronic illness. People's eyes glaze over when I am talking or they change the subject. I say people ... but it's not everyone. Because, I learned quickly not to talk about it. Not to mention that I am not feeling well. I learned to keep a smile pasted on my face even when I am absolutely miserable on the inside. I crack jokes, I smile, I laugh. I do everything I can to be the regular person I was before all of this.

It's frustating. People get upset about things in their lives and they get to vent about it. They get to be rude and mean and snappy and generally upset. They get to have reactions about it. Why don't I? When I am having a particularly crappy day, why can't I come in and say "Today just freaking sucks!!!"

I can post a status on Facebook like that, I can vent in my blog. It's not the same as being able to have a genuine vent session with a person. It's hard to keep all this bottled up sometimes. It's not helping how I'm feeling I am sure.

I don't know. I think I'm just angry right now because I had to sit here tonight, feeling awful, trying to keep from bleeding out through my nose and listening to someone gripe about so many things ... and then I feel like .... ..... why can't I vent?!

I'm like a steam pot ... or a time bomb. AHHHHHHHH!

Anyway, I just wanted to vent about this unable to vent-ness to the people who understand. I will shut up now.

[mishb]

You don't have to shut up hun ..........we all get it

I am exactly the same at work, but it works the opposite way - people start to think that you are now fine and they can start not caring about what they are doing around you.
Starting to not care about covering their mouths anymore when coughing, not caring about making sure they use the antibacterial wash supplied in the bathrooms etc. - it's okay now, Michelle is fine.
No she isn't, and even if she was, this is a great way to go about making her sick again.

Unfortunately, me being me, will continue to laugh and smile and be my happy self and I will not let them see me as the sick person - we have others in the office who like to drag their feet and slump their shoulders so that everyone asks if they are okay........no, this is not my way.

Both my daughters work with me, so thankfully, we can bitch about the others - when we are at home........no real venting required.

Just keep coming on here Nikki, you will be heard

[pberggren1]

Oh Nikki, just go ahead and scream. We are all here for you and same with fb.

[drz]

Maybe we should adopt Munch's painting for an avatar? Or put a recorded sound bit on here of a real blood curdling scream to vent.

[Alysia]

I am not the "screaming" type (unless I need to scream at the health service people when they are making me problems with rtx)...
but I have a good cry often...
usually alone...
or with my psychologist....
I prefer not to burden anyone with my agony
and then I am coming here and can laugh and not be alone anymore...

[Auntie TooToo]

Girl, go ahead and SCREAM YOUR HEAD OFF cause I'm right there with you! I'm normally a very calm, strong and independent woman but this disease truly changes us as I am not the same person that I used to be. Then there's the fact that I hate the way this WG's affects my attitude, mood, etc., and your so right .... people in general do not understand and actually don't want to hear it! Heck, it's hard for me to even explain exactly how crappy I feel throughout each and every day at this point.

Anyway, know that you are not alone in your "adventure" and we have earned the right to SCREAM if we want to!

[annekat]

I agree with everyone, go ahead and scream, vent on here as much as you want, and try to have a good cry! My problem is the tears will usually not come. Certain things help trigger it, like a sad movie or song, or thinking about beloved pets crossing the rainbow bridge and waiting for me on the other side. Crying usually does not last long for me, but does help.

We have had lots of threads about the annoying things people say or do in regard to our being sick but maybe not showing it much. But the newer members need to get on here and blow off a little steam, too! So I will resist the temptation to go into all my complaints again about what people say, and let you do it to your heart's content! But yes, we have all been there and continue to be. I suppose people with other illnesses go through the same thing.... also maybe people grieving for the loss of a loved one and dealing with it every day even though people think they are "over it".

I thought I'd comment on some of your current symptoms, because they remind me of some I had at the beginning, though I didn't have all that you describe. The red cheeks.... I don't know which part of your cheeks were red, but for me it was right over the maxillary sinuses, on either side of my nose. They were full of inflammation and possibly an infection, as antibiotics did seem to clear it up a bit. You mentioned your eyes, and I think on your blog, shooting pains behind them. I don't remember those pains, but I had persistent headaches and a very tight sensation all around my eyes, with little hard spots that felt like swollen veins. When I pointed this out to doctors I didn't get a lot of response. Eventually a hole in my skin developed through tissue death in the crease between my eye and nose. It is still there, about the size of an apple seed, but luckily it is not usually visible because it is in the crease and hidden by my glasses. But it will have to be surgically repaired some day. It's like having a third nostril. Weird, huh? And then there's the alternate crusting and running, or at the same time, which I think is pretty common among us with sinus involvement. I have found that if I do the NeilMed rinse several times in a row, some really big stuff may eventually come out, and the running will have increased in advance of that as the nose secretes more mucus to try to expel the stuff. At this more recovered stage of Wegs, I don't have much crusting and running except when these big chunks are present. And of course it goes down my throat and makes me cough, too, but that has really improved lately. A little stress will bring it back.

Well, anyway, do know that with continued treatment these things will get better. And you won't have to fake it as much while at work or in other public places.

[NikkiNicole]

I knew I was in good company here. I posted on Facebook today that it is hard today to put on my mask. I really don't feel well. My head hurts REALLY bad, my nose is SO painful and I just feel a bit off. I had finally been feeling somewhat normal and then everything changed direction.
My doc emailed me back and wants to see me, she wanted me to do sinus rinses (which I told her I do twice a day). She wants to sit down and discuss a possible change in treatment. Ooooh boy.
And yes, my cheeks get very red and it's almost like a doll (a big red dot just beneath my eye).
This week has been difficult because a co-worker was having a bad week (a break-up and a sad anniversary for her) and she let everyone know about it, and treated everyone poorly, was short tempered and rude to people. And ... there I sat, practically sinking into my chair because I felt so bad, listening to her vent ... wondering if she could even tell how miserable I was. (No, I didn't tell her)
Thank you for letting me scream!

[Alysia]

Hi Nikki, what can I say ? tough time... I'm sending you hug and wishes to better feeling soon. it is best idea to meet your doc asap.
here you don't have to wear any masks. we know how you feel. we feel the same. take care.