Sorry for the delay in updating about the scopes. I did have my upper and lower endoscopies done. This was after much drama and interrogation of every single medical person who came within my line of vision after they handed me a consent form for a colonoscopy! I asked the nurse, "Did they tell him I don't have a colon?" (this was a GI I've never seen) She assured me he knew but this was the most appropriate paper they had for me to sign. I waffled a moment before adding a note about my lack of colon above the signature area and then I signed. Another nurse came to start my IV and she got quizzed, "Does the doctor know I don't have a colon? He can't stick a regular colonoscopy scope on there!" She attempted to reassure me, but I was sort of freaking out. Finally, the nurse who would be with me in the procedure room came and got the same third degree. She promised me he knew and already had the instruments he needed ready to go. She finally set me at ease when she promised me she wouldn't give me any sedative or drugs until I got a chance to ask him myself. So I did and he assured me he knew and it would be fine and I then took my Demerol and Versyd nap like a good patient.
Everything was good on the scopes. I have a very minor hiatal hernia, but nothing to be concerned about and certainly not the cause of my issues. I am still waiting to hear about a biopsy they took for celiac disease, but he said he didn't see any visual indication of damage that they often see with that. All good news, right? Well, yes and no.
I am still in bad shape. I managed to run a couple of times a week or so ago. Nothing crazy...four miles Thursday before last, three on Saturday, then three again that Monday. Nice and easy paces, shouldn't have been a problem. By the time I got out of class around noon on Tuesday I was so tired I felt disoriented and couldn't find my car for a good while. I managed to get myself home where I plopped down in a recliner and promptly went to sleep. I slept all afternoon until my husband got home from work with the kids. That evening I knew the fatigue was back and I was really upset to be right back to square one again. Then things got even more weird.
I started noticing this weird discoloration to my skin. A couple of spots on one leg, then popping up all over my arms. It is hard to describe. I hesitate to call it a rash, because there wasn't anything bumpy or itchy. It was more like white spots or splotches. My skin just had these defined areas that were significantly paler than the rest of me, which is saying something! Over a day they multiplied and was finding at least a few everywhere, but tons on my arms. Then, it started going away and I was relieved. Except, the white splotchy things were replaced with these flat, red, pin point dots. It looks like someone has been sneaking up on me when I'm not looking and dotting me with a red felt tip pin. I got my Dr. Google on and it seems the most likely scenario is something called petechia. Basically, bleeding into the skin. So far mine is minor compared to the pictures on the interwebz, but it is there and making steady advancement over the past couple of days. I also have this bruised looking stuff going on with my fingers that decided to show up yesterday. Possibilities range from some weird virus to serious shit that will kill you. I felt so weird about going back to the doctor when I have a hematology appointment, but it is a month away. I've been seriously anemic for at least five months now plus this new stuff with the red dots, bruised looking fingers, insane exhaustion, and over the last day or so confusion and difficulty concentrating. You don't even want to know how long it is taking me to write this! *sigh* I'm going to call my primary doctor in the morning. I think, at a minimum, we need to see some labs and make sure my platelets and/or red blood cells aren't in some danger zone. I need to know it is safe to wait until my hematology appointment. Honestly though, July 24 is so far away and I am so deeply tired I don't know how I will get there.
The most insane part of the whole thing is how I've been trying to ignore this and carry on. I think I got so used to soldiering on and not letting on as to how sick I was with UC that I've been trying to handle this in the same way. That obviously is not a viable option.