thank you Roberto for sharing this; i hope you do find time to be “selfish” and do things for yourself: things that make it bareable to wake up every day with this disease. And trying to present “normal” to even those closest to me is frustrating. Because then they start thinking everything is fine. and we that live with this everyday all…[Read more]

RE: MTX and nausea: i get it; that is why i switched to the Sub-Q. So i give myself a shot every week. are you taking the shot or pills?

that is awesome Jay. we are warriors and refuse to let this disease take our happy places; at least not with out a knock-down-drag out fight! thanks for sharing.

to further explain my confusion: the body naturally produces (barring cushings syndrome of course) 5 mgs of cortisol a day. So you taking 1 mg every 7 weeks is odd. also. I am on MTX and have been for almost a year; it has been very good to me. hope the same for you.

1 mg of steroid (Prednisone?) every 7 weeks? is that right?

thank you Lizzy for sharing; and belated Happy Birthday 🙂 i almost got anxious reading this only because yes, trying to prepare and anticipate the limits of such an adventure is very…very…hard. and no one gets that ..except us. All the limits you have to anticipate and/or put in place can sometimes confuse people. and the snorkeling,…[Read more]

Raises Hand – Going it Alone here! and frankly, its working for me; it means everything gets to be about me. :))) but seriously, there are (alot) of times that i just have to suck it up and get stuff done (that hard chore, that drive to the lab appointment, etc.,) because there isnt a partner standing by to do it for me.

However, I am…[Read more]

“…try to hold yourself in some degree of compassion, and understand that you’re a sick person and if you don’t live up to whatever expectations you might’ve had before all this started, it’s the expectations that are the problem, not you. ”

this made me pause…and cry. i’d like to “forget” that i am sick, and that this disease is, in…[Read more]

certainly speaks to the strength of those that ARE going this alone.

hi Kelly..thanks for sharing your struggles and experience; this diagnosis is an astonishing thing to have happen to oneself. My greatest struggle so far is the idea that myositis is, for most of us, an “invisible” disease – that is to say, that it shows no outward signs for the most part, it is not well known and even when you stand before your…[Read more]

hi Lizzy that float therapy sounds AWESOME. I have to admit, i have taken a slightly less forgiving path ..lol; i do push my body but that only started once my treatment kicked in (I was diagnosed May 21…and I didnt feel strong again until August 4th) I for sure rest, but within the time frame that I would have rested without this disease.…[Read more]

hi @Lizzysawrus and thank you for reading, and commenting. It is nice to have you relate to the challenges and hopes that this diagnosis has brought.

hi Jerry! just poking around and getting familiar with it all myself; i think its great though so far and if any ideas pop in my head, i will share them with you. but it looks like you guys are thinking of everything 🙂 good job.

hi Ryan! i love it that you encourage exercise without waiting for a Physical Therapy order / referral. exercise doesn’t require a Doctors order 😉 !