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.

[MikeG-2012]

Aren't mothers the best! My mothers first question out of her mouth is usually "...how's work going..." or "you should really get a handle on that weight. It's not going to get easier to take off the older you get". Her timing with that last one is usually at the tail end of a long and painful pred taper.

I'm a hard working, strong willed person. I drag my butt out of bed every morning to come to my job here at the college, because it is what I have to do for ME. If I didn't have my job and sense of purpose, I'd be a huge, pred induced, blob of self pity at living at home 24/7/365. There are times when it is all I have to climb out of bed and get in the shower to get ready for work. On those days, I swear that people at work all decide to come to me and talk about how good I must be doing because I haven't missed work in a while. (most of the people who come to me and say that are the ones who stay home for two days with a sniffle, allergies or start of a common cold)

I think because we have to be fighters with this disease, we persevere. I think people think that since we are going about our daily lives the best we can, and they only see us every now and then, that we are magically cured or something. I also think that because most of us are sick and tired of trying to tell people that we're NOT fine, that we just tell them we're "OK" when they ask how we're doing. Maybe we need to hunch over and groan with every step that we take (like we feel). Maybe if we moan and groan all day and make other people miserable with us, maybe, just maybe people will recognize that we are REALLY SICK PEOPLE, trying our best to keep on keeping on--even when we feel like crap.

OK, so I've vented my frustrations for this morning. Thanks for listening everyone, and thanks Lily for sharing your frustrations with your family here. Let it be known that you are certainly not alone, and that we all have one or two people in our lives that irritate us on a regular basis--because they just don't, and never will, get it.

Enjoy your day everyone, wherever you may be!!

[Lily0303]

Sounds like mine. What I really want to know is, since it's been 7 years...well she ever come to understand I won't ever be normal? I used to be able to push through anything and keep up with the best of them, is that why she thinks I can just snake this off?

[vdub]

you should really get a handle on that weight.
That seems to come up a lot with me, too! Very frustrating...

I read the funniest thing a couple weeks ago on my MG forum. An individual was restoring his car and hadn't ever been it with the original 16" steer wheel, so he writes a message asking how much room there is and would he fit. He describes his size as "I'm big, as in, LOOK at that big fat guy, Mommy!". :-)

[Green Grass & High Tides]

Work Shame. Don't buy it.

Wegeners is a serious illness. Not working and maintaining health is a FULLTIME job.

I worked sick for 7 years till nearly dead. Then worked more til nearly dead. Repeat for 15 years...

NOBODY tells me I should do more now but it took a long time!
All that, "BUT you look sooo good." stuff is often people uncomfortable with chronic- life threatening illness.

The main thing is that Restorative Sleep is absolutely essential to surviving and reducing meds.
Doing too much is not good. Doing too little is not good. The balance must come from my experience with the disease.

I love my business. It's like crack. Once I start, I can't stop. But that will kill me. So will inactivity.

Such a hard balance. Anyone surviving wegs knows this and I have deep respect for.

Best wishes,
Tom

[MikeG-2012]

Wegeners is a serious illness. Not working and maintaining health is a FULLTIME job.

Yea, occasionally I find that out. I just don't have the energy to even get up and get clothes on some days. Luckily, I build up some comp time little by little, so that combined with sick days, really help me when I need to crash and restore.

Nicely put Tom. Too bad I cannot afford to stop working...

[Swb21188]

These are my thoughts. When you first get diagnosis those around are concerned and on board with understanding but as time passes it becomes as a matter of fact and they stop seeing it or not see it to its full extent. Just recently my partner commented how I have the Weg thing beaten. I chose to allow him this sense of security because the last thing I want is for him to be on permanent alert. I do agree it is frustrating and yet again something we have to deal with.

[vdub]

The main thing is that Restorative Sleep is absolutely essential to surviving and reducing meds.
Interesting you should mention this now. I have been feeling really good for the past few weeks (almost months now), but I have been through this up and down cycle too many times to know that the up cycle doesn't last all that long. Yesterday, I didn't get up until 0800, by 1000, I had decided to go back to bed and lay down for a while. I ended up sleeping until 1800, got up ate a bit, then went back to bed and slept until 0500 this morning. The "sleep crash" happens ever so often so my wife is used to it at this point. It seems to happen every 2 or 3 months where I just go to sleep for 36 or so hours. I don't really feel bad, but I just hit the wall.

[Jaha]

My mother is really hard on me with the criticism also. I always say it is like her taking a knife and stabbing me in the heart. When I was first dx'd, she told everyone that I had some sort of lung disease, because I was a smoker at that time. I tried to work for all most 4 years and was getting to many infections and hospitalizations, being in the healthcare field I had to quit. I think we all have friends and family who do not bother to listen to us or read anything about this unpredictable, ugly disease. I am sorry Lily that you are having undue stress and hope things improve for you.

[drz]

I think many people misunderstand our need for flexibility and uncertainty about our ability to keep appointments or follow through with planned activities. They assume we really aren't interested or don't want to do a planned activity when we tell them we have to wait and see how we are that day. Some days we just don't have the energy to get out bed let alone go to some planned social activity with our friends or family. Learning to be flexible about our plans and activities is one of the most frustrating things about having Wegs. We often don't know what we will be able to do on any given day or time till it arrives. i have slowly learned to husband my spoons and rest up ahead of time if there is some I really want to do in order to increase my chances of having enough energy to do it.

[vdub]

I think many people misunderstand our need for flexibility and uncertainty about our ability to keep appointments or follow through with planned activities.
Wow, I thought I was alone with this issue. Not that I'm glad its a problem for you to drz, but I'm glad I'm not alone. Misery loves company and all that. I sometimes think my family believes I use the disease as an excuse to not attend something at the last moment or to refuse to commit to something days out. I did commit to hosting T'day dinner this year (along with my wife, of course), but doing so was going out on a limb for me. I'm still feeling welll and think I'll probably slide through ok, but I had a marathon sleep time (about 24) the other day. I think it will be ok. I guess others must have the same issue, eh?

[MikeG-2012]

Wow, I thought I was alone with this issue. ... I guess others must have the same issue, eh?

Trust me, you two aren't the only ones! Unfortunately, I'm only 48 and not retired. So, when I am having one of those mornings, I still have to drag myself out of bed and go to work. One day this week, I woke up with major joint pain, so I took a pain pill, emailed my boss that I was coming in late , and went back to be for two hours. I am glad he gets me, knows my work ethic and knows what I am going through. It is really cool to have great boss who completely understands and gives me the flexibility to take time when I need it to recharge.

Speaking of work; sometimes, I wear myself out at work during the week, and it upsets me that I am not able to do more on the weekends, but rest up for Monday. Work, rest, repeat... <sigh>

[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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[Bing505z]

I love to work also and believe that staying active is key to staying healthy. You also need the support of your close family and loved ones. So Lily, you may need to sit down with your family and remind them that you really need their support.

[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 :)

[MikeG-2012]

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

I think the key word there Alysia is MORE!!

[Alysia]

I think the key word there Alysia is MORE!!



No buddy, my key word is pred :)