I have to remember that all flare ups end. It feels like they won’t but it will. It takes time I feel like I don’t have to give. The pain is intense. If I put pressure on the foot it starts to burn like I dipped it in fire, but it stops burning within minutes. […]
Content – Talk of suicidal feelings surrounding Chronic Relex Sympathetic Dystrophy (CRSD), some hopelessness, hope art and talk of anniversary dates. We talked about how hopeless it feels to walk into the ER believing it’s a source of relief only to be told that there’s a crisis out there that has nothing to do with […]
Well then, I guess even the ER is refusing real pain therapies to people with documented Lupus and Chronic Regional Sympathetic Dystrophy (CRSD). I showed up at a sustained level 9 pain with my foot and leg messed up only to be given a line of crap and some Tylenol. Uh huh, Tylenol! I cried. […]
It’s been awhile since I had more than pain going on with the foot. Last night I hurt so badly I sure thought I was going to the hospital! The difficulty is that it is swollen 3x it’s normal size and is split open. It hurts more than I can say and yet the doctor […]
I’m happy to have finished her. It feels really good. Here she is in her handmade dress which is upcycled from a handmade Indian blouse with beautiful beaded details in red, gold and blue. Annette is approximately 35 inches long. Her hair is made of beautiful, textured yarn that looks great in a ponytail or […]
All ‘what if’ roads lead to nowhere. I got to thinking, what if I get this art table but I still don’t paint? Then of course my head took off, so I decided to sit in my wheelchair at the dinner table and paint a ‘what if’ road map. What if I struggle with the […]
Dr D and I again discussed my inability to paint. It pains me that I feel incapable of it. I still don’t trust the same though I’m getting better. But I also realized that I don’t have the same amount of alone time I once had before everything fell apart. I needed alone time to […]
They came for tea and a meal of chicken with sides. They came to see the frogs, fish, snails and the cat. We had the best time, we really did. I need to let myself be ok with the good time. Don’t think of what I could have done differently or let my brain beat […]
I get that a lot. As a matter of fact, the new CNA, the one I like quite a bit, said I look like I could get out of the chair and start walking. She said I look perfectly healthy. I’m beginning to be ok with such nonsense. I can’t get upset with people for […]
I hardly ever do this anymore. It’s been months since I turned on music for myself. Music is emotional for me, anxiety provoking. I feel so deeply with it that it’s often uncomfortable. But this time I turned it on, lay on the bed and took it all in. I don’t know. It seems significant […]