I went for my checkup on Gob. I can’t believe I have had him for two months! Sheesh, it feels like forever, and yet it has barely been any time at all.
We talked to the doctor about my other recent medical problems, about how I probably have Lupus (but we still don’t know, it might be something else, it’s definitely autoimmune though) and we told her about how I’m spilling protein in my urine and my weird stroke-like attacks, etc.
We asked her if it was possible once we saw a rheumatologist and got the autoimmune thing under control if my bowels would work again. She gave me a hard “No.” I was kind of stunned. She said that if I had Scleroderma, then yes it could affect my colon, but definitely not Lupus. She thinks it sounds like Lupus as well, and no one suspects Scleroderma. I don’t have symptoms for Scleroderma. “This is definitely from your Ehlers-Danlos Syndrome.” “Your colon isn’t going to start working again.”
Okay. Point taken and hope crushed. We didn’t really think my colon would just suddenly start up again, but we had hoped. I mean, living with a bag is do-able, but if you don’t have to then you definitely don’t want to. I sort of got my hopes up that maybe my colon wouldn’t need to come out now that I probably have Lupus. No such luck. I’m still waiting on approval for one last test before I can get my colon surgery, and I also have to get the autoimmune condition under control before we do surgery.
I had my sleep deprived EEG finally, we’ll get the results in about two weeks. I also finally found a Nephrologist who will take my insurance, and I have an appointment to see him in about two weeks. We need to figure out what’s going on with my kidneys and hopefully get that under control.
My neurologist saw me and we’re going to start my Prednisone up once I can taper off my Florinef in a few days. I’ve already talked about my feelings on this new steroid. They are bittersweet. I know it’ll help the autoimmune condition for sure, and right now I’m just trying to think of the ups, rather than the downs.
I’ve been really behind on everything in my life. I am struggling really badly to do the very few things on my plate right now, including things most people don’t struggle with, like showering. It takes me hours each day to feel well enough to get in the shower. It’s awful. I struggle just to get 2,000 steps on my pedometer (this coming from someone who used to jog several miles a day).
My eating is still really poor and I don’t get more than a few of cups of food in per day, most of which is liquid food. I’m absolutely desperate to get my illnesses under control. They have been out of control for so, so long, and I have always managed as best I could. Now I’m barely getting by. The Prednisone should change that, so I do have some hope, but I need to get in to see these new specialists yesterday.