not going to explain.

yea, so i'm not going to explain about the horrible morning/afternoon i had on march 28th. basically i had yet another patient sitting next to me that was sharing his illness with me and asking about what i have while we were getting our different treatments (like i had the week before, a girl named India with sickle cell disease). this guy was named Taurus [guess what his zodiac sign is...] and he has Gastroparesis. i had my mom take my phone to the lobby and where ever it got 3G. He leant over to me and told me he didn't want to say this with my mom around but he said i was absolutely beautiful and that he knew i was going to return to how i was before i got Stiff Person Syndrome.. he could just feel it and believed in it 100% and that he'll be praying for me. i thanked him but thought 'nobody with SPS can return to how they were before'. it was nice to hear though and i dreamt a little about it, but then just imagined my future life being all disabled because no treatments were working for me this whole process starting in 2011.

i had to stop his rambling (and i know rambling..i'm a crazy rambler on my meds but when i can see that someone looks so uncomfortable, i would stop and ask if they needed anything, if not, i'd stop talking to them. but he just kept talking) and tell him that i was tired and wanted to nap. i did feel sleepy but the main reason i told him that was because the whole time of him talking and me talking here and there, but only for 30 seconds.. i was SO awfully stiff and in SOO much pain in the reclining chair facing the window that i require because i put my foot on the wall and see if i could bend my knee. i just wanted to start bawling but then mama came back and i was beyond distressed. eventually the quiet and the white noise of the machine pumping the steroids into me got me pretty relaxed. RIGHT BEFORE THE STEROIDS WERE OVER! the machine started beeping so my nurse took the IV out, bandaged me up, and i had to get right back into my wheelchair in not a good situation at all. just had my head dropped with my hand on my forehead, crying. we had to go down down the Barrett Center to see Dr. Currie.. a neurologist and i think is my neurologist, Dr. Espay's, assistant when he is gone. he looks like my friend Shelby. he's really nice but i was getting all the vitals and stuff and waiting for him. waiting even for a short time, i just wanted to scream. 

nice but seriously, i was in so much pain.. why couldn't you see that?

had to get a picture with him of course 

and of course i put on my 

used all the time 

convincing smile that looks like i'm in no pain at all.

good thing the consultation was short. we were on our way out of the Barrett Center, but my mom had to go the the bathroom before we left. i thought 'oh, great'. once again, i wanted to scream.. i wanted to scream louder. once again, i had my head dropped, crying from the excrutiating stiffness my leg was in. you can never imagine. finally, after a long wheeling session being wheeled silent with my head down and covering my face, i was in the backseat, where i always have to lay because of my stiff limb. it's the only place i fit.. i'm just glad i'm not taller.. i fit perfectly but what if someone else crazily gets a stiff leg and can't fit in a backseat because they're taller? what then? i always told my mom.. glad i'm not my 6'5" butt of an ex with his crazy long legs. leaving the parking garage and into the light, i began crying to myself and my pain again. i was wondering if i'd ever get relief. i texted a guy i was hoping to date eventually after i would be friends with him forever, "tell me things are going to be okay." he was confused and i don't know what i replied with but he told me things would be okay. in my situation and grief and doubt that we'd ever date that made me even more depressed, i didn't believe what he said and just more crying to myself on the bumpy Clifton roads, until we reached the highway and things eased a bit and i got tired, closed my eyes, and rested.

the end.