Everything is different now, I am different now.

I'm editing an entry that I wrote (but didn't post) a few days ago, I'm glad that I waited. It's said that when one is writing when upset, it's best to put it aside and re-read before sending. A very wise piece of advice!

My original post came as a result of comments directed at me in the previous days from family members and others (I'll clarify that they did not come from my immediate household, they ask nothing of me except to tell them what they can do to help me. I'm one lucky woman!) I'm learning that people close to me will deal with my illness in their own way, sometimes in a way that I find very hard to comprehend.

Don't get me wrong, I'm very grateful for all the care and concern that flows my way on a daily basis. I value your supportive messages, both posted here on the blog and sent to me privately. As for those close to me - sometimes we may disagree, sometimes we both may say things that the other doesn't want to hear. But my life is not the same anymore. I'm making up new rules along the way that help me deal with what tomorrow brings, and I hope that sharing them brings some insight as to why I may react the way I do.

My New Rules:

I get to say "no" (something I've always had a hard time doing), and I don't need to explain myself. If you know me at all, you know that I want to do everything I could before I became ill, but I just can't. Sometimes I'll have to cancel plans, please don't make me feel bad for doing so. I'm already very unhappy about it.


I want to hear how you and your family are doing, but don't be upset if I don't reply to emails & phonecalls as quickly as I used to. Sometimes I don't want you to hear in my words & voice that I'm having a rough day.


I appreciate all very kind offers of help, and I need to learn to accept that help without feeling like I've failed because I couldn't do it myself. But I will still try to tackle it myself first!


Please don't tell me that you know that the diagnosis is a mistake and that I should see your doctor. This is not a mistake (I've done my fair share of praying that it was). I've got a large contingent of exceptional doctors who are working very hard to keep me here (and comfortable and pain-free) for as long as possible. And from my perspective, I'm glad that I know, it's far better than feeling unwell and not knowing why.


Although I've been quite self-conscious some days about the physical changes that prednisone has caused, I'm trying to be more comfortable with seeing friends and family. When you do see me please don't tell me how ill I look, I'm well aware of it. Take notice instead that I'm smiling and laughing. We're still doing a lot of that!


I'm very susceptible to infection as I undergo immuno-supressant therapy. Please don't visit if you're sick, you might get over your cold in a week but I'll likely be down much longer. "Just the sniffles" is too much of a risk right now, and not what I want to deal with on top of the drug side effects.


I've done enough speculating about what might have caused this disease, and I'm done. Even if it was an environmental influence over which I might have had some control, I can't do anything about it now (and experts have no idea what caused this, so it's a moot point). Asking me if I ate my veggies as a child (and yes, I did) makes me feel like you want to blame me for my illness. I'm not going there.


It's okay with me if you ask about my illness. But let's talk about lots of other things too! :-)


My doctors explain my options, and I decide which treatments & drugs I want to go try. They completely support my decisions allowing me weigh the quality of my life against treatment side effects, and I ask that you support my decisions as well.

My daughter and husband are my top priorities. Period. They will get "first dibs" on whatever energies I have, I trust that you would make the same decision if you were in my shoes.