you don't look sick

[Alysia]

I must be uglier than I thought. I don't get the "you don't look sick" much, if ever. I do try and hide it on a day to day basis, and it probably only really shows to my immediate family.
I have noticed though that a lot of the time my wife is shocked when she comes in the room and I'm staring at the floor or looking like I Will doze off any second. Even though she knows what's up, it's easy to forget.
It happens to me too. I think "I can do this or that" and find out half way through the project that I need a long break. It is humiliating not to be able to do things that even 1 year ago I could do.


Sent from my iPhone while driving on the freeway.

Hi greenjeep, thanks for sharing
I understand the humiliating feeling, even tough it is prob more a men's one. too sad
at least your wife knows how you are feeling
and you keep your sense of humor, while driving on the freeway

[Deborah T]

Lilly - Life truly is a gift. I think the only thing I "like" (and I use the term loosely) about Wegener's is that I can rejoice in each day that I feel good. I don't take the good for granted, and I appreciate other peoples' sufferings more. As a nurse,
this has been a valuable life lesson for me.
I hope you have better days.
Blessings -
Deborah T

[jakekell]

Lilly,

This whole deal is a bit much at times as we all know. I am sorry you ex made you feel ashamed as it just happens. I can tell you my badder isn't what it used to be after having cancer, then WG/all the meds. I have a pretty good sense of humor, but have to say sometimes I have to look for it/find it under a rock!

We are wrapping up our winter holiday here and heading back to MI soon so we thought we would make a quick trip to our favorite casino. We had a great time, but as with most of us I started getting tired after a couple of hours. I hated to tell my husband lets go so did made it a little longer than wanted to, slept all the way home. My Mom used to remind us when we were upset "it is what it is", we don't have to like it just deal with it.

I hope you can feel better about the bed issues soon it washes out, a real men deal would not have made you feel that way. He must have been rather special....or something I won't say.

Hugs to you,

Mary

[Lilly]

Glider, That is one of the worst things to me too. Sometimes I feel like I am sleeping my life away! But I am not dealing with raising young adult children. I wonder of your children have investigated your disease.....learned about it.....written school essays about this rare disease that you suffer from? I know different cultures handle things differently, and I am not sure about the differences in the UK and the USA about being open about illnesses. Maybe they would be ashamed, or maybe they know, but still just don't get it. I can see your concern about wanting to be a "role model" for them, and battling fatigue. No one knows the depth of fatigue we suffer from.
I had to fight for my "disability" in USA. I had to sit in front of a judge and tell her why I could not work, after a year of keeping records of every Dr.Appointment, every surgery, all my medicine changes, my flare up I had in that time. My osteoperosios caused me to break my arm and my hand in one year, both needed surg. and metal to heal. I told the Judge I wanted desperately to work, but for these reasons, no one would let me have time off of a job for these dr appointments, infusions, surgeries. So I was granted my "disability". That's ONE way it works. I was not being deceitful in saying I wanted to work. My sister got me a job where she works, for Eye Dr. I sit and do Insurance on the computer. (You cant really break any bones doing that!) 4 Days a week, appx 20 hrs a wk. But I have the flexability to not come in if I am too tired, or having wegeners complications. I am blessed for this job. Maybe you could find something like that. I never thought I could! But I did! Your lethargy may keep you from doing this. I have to sleep more hours at night to have this job. I wish you could get on "disability", so maybe you should try, I had to get a lawyer, but I got it. Kids these days, even raised in good homes like yours with good hard working parents, just don't grasp the work ethics we had. But I will hope you are feeling better soon about your illness, and maybe if your kids learned more about your years of fighting this disease, they can appreciate it more. And realize, you are doing the BEST YOU CAN! Take care, and wish you the best.

[Lilly]

Keep trying Anne. Maybe send them a condensed version of Wegeners, focusing on what you specifically suffer from, and the results that can happen, and how the condition is affecting you now. Just a page or two. Maybe they will listen, maybe you have already done this, maybe they still will not get it. But maybe its worth a try. Wishing you luck ...... :-)

[Lilly]

HaHaHaHaHa!!!!!! Sooooo Cute Alysia! My early morning laugh! Thank you!

[Lilly]

Thank you Deborah T, and Mary. After I posted that, I thought......People do not want to know this stuff!!!! I felt embarrassed. But It just brings me down to a low for a day or two. And just makes me realize THATS a big reason I am such a "homebody". I never know when these things will happen! But feeling better today, and your posts did that for me. I will always have to deal with these things, and so, just find the humor in it, forget what the Ex husband did, He was good when the disease was young, but as my body started to have worse and worse issues, the less he was there for me. He made me feel like I was Overreacting. But I thank you both for your understanding and un judgemental replies. Have a great day! I am going to do my best!

[Alysia]

Thanks for your precious sharing Lilly. we love you

[Lilly]

Thank You Alysia, Thank You so much. I have changed a lot since I have surrounded myself with friends like you. I Love how we can all be there for each other in so many different ways. I have learned a lot about our illness in general, and how some have it better and some have it worse. But we are all blessed in some kind of way. When I got your post, it made me cry just because you cared. Everyone on this site is special, and I am so glad to be a part of it. I love everyone on here with an unconditional love and respect we all seem to have for each other. It is amazing,......we just gotta keep on keepin on! And just do the best we can. Love to all~

[Alysia]

I need to vent please…..
So, I had today the doc's check for asking recognition in disability. (It is less about getting something, which they will prob give nothing since I am working, but I wanted it in order to pay less taxes).
When I just came there I understood that I have no chance: everyone who came there was kind of being lame some came with crutches (I hope that is the word for using 2 walking sticks) although I suspect that some of them were liars. At least 2 came to the room like they are going to fall at any min and went out almost running….
the check lasted no more then 5 min. the doc was arrogant narcissistic character, he asked what are my symptoms and "cut" me after 2-3 words, with kind of dismissive gesture, and commanding tone for "next". The idiot (sorry, I an angry ) didn’t even noticed my saddle nose until I told him. then he checked my joints (without washing hands after the "lame" who just was inside before me). it was frustrating and even humiliating
I came home angry, damn gov, they can use you so well, doing army, paying taxes, but then they give you nothing.... I went to clean the litter box of my cats and it spilled on me…. this was the final accord to define my day as a **** day….
But then, after a shower, I decided not to give up and I wrote a an e-mail to their ombudsman complaining about the disrespect. I doubt I can get anything, still, I said what I had to say
Thanks for listening