I saw my rheumy the other day and I asked him if this joint pain and fatigue...

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  • but I'm not satisfied with the whole flares being common thing, there has to be a better way of controlling this disease >:(

  • I've often said, maybe when I was so sick, that having cancer may have been easier. I've lived over 25 years of being sick and through HS, college, grad school, teaching and missed out on so much. If I had cancer I would have either lived or died. It sounds harsh, but I've been though so much and I'm tired (as have so many others. We've lost so much)

  • You're right, living with this everyday and not knowing how we will feel when we wake the next day really takes it's toll...

  • and I'm not downplaying cancer. I've lost a couple of VERY brave souls to it. Their battle was hard and terrifying, but it wasn't every day for years and years. I've known many, thankfully, that overcame their cancers and moved on. all illnesses suck :(

  • I know you weren't downplaying cancer, it is horrible...but I find it hard because when someone says I have cancer people respond with OMG I am so sorry because they understand it is awful... they understand the hell they are going through with one word...I find myself trying to explain what we have but it takes so long and even then people just say oh wow....but really have no clue, I don't want to have to feel like I have to "sell" vasculitis but we almost have to so they can understand how it effects our lives...it's just frustrating

  • THIS is so true: "says I have cancer people respond with OMG I am so sorry because they understand it is awful." I know so many people that have been called a fraud in the fight against vasculitis (as if we're faking how terrible our days can be). And I think THAT ticks me off more than anything.

  • the need to explain ourselves...I feel like I'm complaining all the time to my family and friends but if I don't tell them how I feel they don't realize how sh*tty some days are, that some days I just need to lay on the couch or when I'm doing something and run out of gas I HAVE to go sit down and rest for awhile

  • Feeling the same today had a really bad day yesterday but as it was Mothers Day here in NZ i tired so hard to be positive and enjoyed my day with the family. I just said to my mum this morning I am so sick of feeling like I am pushing a wheelbarrow uphill backwards!!! And sick of feeling sick. But positive is the answer isnt it!!!! I try not to complain but its hard Tiina. all the best sent to you xxx

  • What I hate the most is when someone says, 'At least it isn't cancer'.

  • When I got my diagnosis, my then Rheumy told me my disease was as difficult to treat as a severe cancer, and that the treatments are as hard on the body as cancer treatments. Now that I've had the max amount of cyclophosphamide IVs and very high doses of Pred, I know what he was talking about. I've had my share of "at least it isn't cancer" - I urge those people to read my blog and after reading they are like "phew, I never would have guessed". Ha, they don't see my facial palsy, limp, moon face, funny belly... When I try to tell about my experiences it sounds like complaining, so I make them read the blog.