@lizzysawrus Great article! I have welcomed many of my family members and friends into our world. Many of them told me they had no idea how difficult life is like this so yes, better understanding is one of the bright sides of this awful virus.

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, the scratches, …i was right there with you worrying – lol. and then re-setting your own personal expectations: that can be depressing, and frustrating: Someone who was once a strong swimmer having to be pullled along by the JetSki: I know was hard.
I am ALWAYS thinking exit strategies now. and yes, you are right: spontaneity is a huge NO.
it does take away some of the joy – but we learn how to find joy in places most people don’t.

I’ve done my chronic illness partner-less so it’s my normal… it still sucks but it’s all I know. I feel so bad for you. I know you’re strong, you know you’re strong and will get through but right not, or sucks.

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 stronger for it. MUCH stronger.

@lizzysawrus I can’t imagine the shock you faced hearing this from J! I was shocked to read it; I actually gasped out loud. Thanks for the positivity despite that it is a terrible situation for you and for providing tips to help others may be going through the same thing. I just happened to get lucky in meeting my husband the year I got sick and he has stuck by me now for 18 years. That is more uncommon I think and I realize I am blessed. Hang in there and focus on you. Just keep swimming . . .

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. I suppose that sounds like i am in denial of this diagnosis – and maybe i am …lol…but for now, I am eager to see how much i can feel “normal” and do the things when and how I want to; not when and how this disease wants to; I wont lie: it is hard, and i feel the “lessening” of my abilities but i keep pushing. If this disease can come upon me out of nowhere, perhaps it can go away just as easily 🙂