-
ac's profile was updated 2 years, 8 months ago
-
ac commented on the post, Stand up, alone 2 years, 11 months ago
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]
-
ac commented on the post, Back to square one? 3 years, 1 month ago
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?
-
ac commented on the post, Finding my happy place with IBM 3 years, 1 month ago
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.
-
ac commented on the post, Back to square one? 3 years, 1 month ago
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.
-
ac commented on the post, Back to square one? 3 years, 1 month ago
1 mg of steroid (Prednisone?) every 7 weeks? is that right?
-
ac commented on the post, The travels and tribulations of going on holiday with chronic illness 3 years, 6 months ago
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]
-
ac commented on the post, Facing rare disease alone 3 years, 6 months ago
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]
-
ac commented on the post, A Few Words for the Moment Before Myositis 3 years, 7 months ago
“…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]
-
ac commented on the post, Kept Promises – "Love Never Fails" 3 years, 7 months ago
certainly speaks to the strength of those that ARE going this alone.
-
Anne Carlo published “Story” 3 years, 7 months ago
-
ac wrote a new post 3 years, 7 months ago
The woods in any season, in any weather, is the most comforting and peaceful place for me. I am grateful to be able to get back to hiking and riding in the great outdoors. Of course, with dermatomyositis (DM) I […]
-
Lizzy Finn replied 3 years, 6 months ago
Great job! I went for a hike (3k, all flat) last week and was SO THRILLED that I managed it, it was such an amazing feeling. Yours sounds intense, you were really brave. I wish for many more successful hikes for you 🙂
-
-
ac commented on the post, Unexpected lessons learned while facing my new reality 3 years, 7 months ago
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]
-
ac commented on the post, Month Five with Dermatomyositis 3 years, 7 months ago
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]
-
ac commented on the post, You must be doing fine!!! 3 years, 8 months ago
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.
-
Anne Carlo published “Image” 3 years, 8 months ago
-
ac posted a new activity comment 3 years, 8 months ago
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.
-
ac commented on the post, Leg and Arm Exercises for Myositis 3 years, 8 months ago
hi Ryan! i love it that you encourage exercise without waiting for a Physical Therapy order / referral. exercise doesn’t require a Doctors order 😉 !
-
ac wrote a new post 3 years, 8 months ago
This image shows the mountain bike trail I rode, on Sept 20th, my first time back on the trails since my diagnosis of Dermatomyositis in May. I used to ride trails twice this distance, on MUCH harder trails. […]
-
Lizzy Finn replied 3 years, 8 months ago
Wow, well done! Your story is similar to mine – diagnosed in June and had incredible pain and weakness. I’m so impressed that you are managing to move more for your own health and happiness. I still can’t manage more than a 15 minute walk but every day I hope that with rest, and good food, and sleep, and meds, I am moving back towards being well again…keep fighting!
-
ac replied 3 years, 8 months ago
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.
-
-
Jerry Williams replied 3 years, 8 months ago
@annecarlo There are times I find myself intentionally not doing something because of what others might think – that because I can walk with my cane one day, I am fine and all better. I am working on trying to not do that anymore and just live my life. Good for you though for getting out and doing something you love and miss. Keep at it!
-
-
ac changed their profile picture 3 years, 8 months ago
- Load More