Needing to vent

[Lily0303]

I have a question for all of you: does anyone else have a problem with their family understanding? I was in a car accident a week ago (no major injuries thank goodness even went to ER to be sure). While my car is ooc I'm looking for a new one. My mother insists on me getting a job which could be adverse to my health. Which is odd because she gave the whole wegeners speech to my fiance when we first got out here. She explained everything like she understood but the way she keeps pushing makes it seem like she doesn't. I don't know what to think and it's stressing me out greatly. What should I do?

[vdub]

Oh, yes! I think all of us understand what you are going through. One of our biggest complaints is always hearing "but you look so good". Yes, we look good, at least, until you have been on pred for 5 years. Your family doesn't see the constant fatigue you have and they don't see the constant, low level pain in your joints and muscles, or the night sweats. And, they don't understand the unpredictable flares that seem to come out of nowhere.

Shortly after I was diagnosed, i had a sister-in-lawn announce to the family while at a reunion that Wegener's "wasn't a big deal". According to her, she had a friend that had wegs and she "looked" just fine. The family remembers that and I get the feeling they think I'm exaggerating or fiegning my illness despite the many, many drugs I'm on and the half dozen or more surgeries I've had in the past 6 years since dx. The only one, that truly understands my illness is my wife. She is a trooper! She stands by me no matter what. She knows what I'm going through and sees it every day. Even moody from the pred or anxious or any of the other bad side effects, she's always behind me 100%. Gotta love that girl!

I'm retired and my kids are grown and gone and quite successful on their own -- thank god my kids are successful enough that they don't have to come home and live with us. I don't think I could handle a normal job very well. For the past several months, I have felt very normal, albeit not very much stamina, but I certainly have enough energy to do the job I had before I retired (network administrater). However, I have no idea how long this "good spell" will last. Traditionally, I have gone back down within a few months, so I'm waiting for the inevitable crash. tn wouldn't be fair to an employer to be hired under those unknown conditions. Not to mention the many, many doc appts I have which would take me away from the workplace. On average, one appt a week, but that's the average, sometimes there are weeks with multiple appts and other weeks with none.

If I could work from home and at my own pace, say inputting something into a computer, I could probably get by and be productive to society again. If I wasn't retired, I would certainly be looking for some form of work, but it would have to be something with very specific parameters tailored for my condition and with a very understanding company. i would find it real difficult to ever go on disability -- I'm just really proud and bone-headed about doing that.

[Lily0303]

I work for a company called favor over in Austin, I love working for them because I work at my own pace, set my own hours etc. The best part is I am my own boss. Until the accident all the money I brought in was extra, I didn't need to just made me feel useful and got me out of the house a couple days a week. My fiance Jason, I love him so much, sees everything. Even reminds me when I'm pushing to hard at work. I'm so grateful for him, can't tell you how many times I've broken down because of my mother over this.

[vdub]

can't tell you how many times I've broken down because of my mother over this.

What is it she wants you to do? Excel? Climb the career ladder? If you have a good job, you like it, and they like you, I don't think your mother could possibly have an issue. Besides, its none of her business either way. The only one that counts is Jason.

I certainly know what you are up against, though. My mother is totally over bearing and overwhelming. I don't even think she realizes the effect she has on others. I have pretty much abandoned my family and cling to my friends, my wife's family, and, of course, my kids. My family causes me a lot anxiety and that's something I don't need, so I stay away as much as possible. The hardest times for me are Thanksgiving and Christmas when they all want to get together and I want to stay away because of the extra stress they create. Usually, I'm pretty successful at making plans far in advance where I'll be gone over the holidays. Going to my kid's houses is always a safe play.

Wegeners is not well understood by people who don't have it or don't have to live with someone who does have it and that lack of understanding makes the disease all that much more problematic. I guess you kind of just have to walk away from those people.

[Lily0303]

Ever since I moved out and got a small family of my own (adopted Jason's daughter as my own) she became bearable. It's when matters of money come up that she is her old self. We have to get a new car and she is freaking out because she thinks we are going to struggle. Just wish for once in my life she would trust me. I sometimes wonder if she thinks having wegeners is my fault.

[Alysia]

Oh, yes! I think all of us understand what you are going through. One of our biggest complaints is always hearing "but you look so good". Yes, we look good, at least, until you have been on pred for 5 years.

hmmm 8 years on pred and still looking good...
And my sweet Phil was 11 years on pred and he was the most stunning beautiful gorgeous good looking man I ever saw .... ♡♡♡♡



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[Alysia]

I dont expect a non weggie to understand how I feel. I even prefer to wear "the mask"...

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[vdub]

he was the most stunning beautiful gorgeous good looking man I ever saw

Obviously, you have never seen me.... Quite stunning if I do say so myself! :-)

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[MikeG-2012]

VDUB for PRESIDENT!! You look the part!

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[Alysia]

Obviously, you have never seen me.... Quite stunning if I do say so myself! :-)

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Not too bad after 6 years on pred... I think the more we take pred - the more fabulous we are