So I’ve been a little off this past week and a half. This time I was very good and notified my doctor even though my symptoms are very slight and there is no pain or urgency yet. I spent yesterday getting my blood drawn for labs and dropping off “specimens” to be analyzed. I have also caught a cold and have a sore throat. I’m desperately hoping that it’s gone by Thursday before my Remicade infusion. I won’t be able to have it done with a cold, as Remicade compromises the immune system. I’ve been off the Prednisone for two months and am ambivalent about where I am right now, especially because of the last two weeks.
A little catch up first…
Two weeks ago I was running or doing hot vinyasa yoga everyday. My knees were beginning to hurt a lot from the running so I added yoga back into my routine and it was helping. The running is great for keeping my gut regular and yoga has always helped me manage pain and stress levels.
While everything was going great with my gut and fitness levels, the one downer from coming off the steroids was my face. For my whole life, I’ve had a clear complexion. But I noticed the first time I came off steroids I had a little rash around my mouth and nose. It disappeared pretty quick and I forgot about it. But this time, after coming off the steroids, the rash didn’t disappear and I couldn’t forget about it. Whenever I worked out it would sting and get worse. Also let’s face it…when you’ve never suffered from acne before, permanent red bumps tend to stress you out. Why is it there? When will it go away? It looks so bad!
Apparently, while most people get acne/rash problems while on Prednisone, I get them after I come off. I was prescribed multiple topical steroid creams for my seborrheic dermatitis but the dermatoligist said that it was unlikely to go away without a round of antibiotics. I expressed my concerns about being on antibiotics to her and she said we could try to keep it a short round.
Damn it! Shit! F***!
Which brings me to two weeks ago. I was already noticing some changes in my bowel movements and then I had Indian food and ate way too much. Overeating is still one of the worst things I can do to myself. I felt pretty horrible until late in the evening. The next day my bowel movements were…explosive. But I thought it was just from eating too much Indian food. The symptoms however continued throughout the week.
I have extremely bad gas that causes my stomach to be constantly cramping. If my arms rest on my stomach it feels like there is something in there, moving around like a snake. Instead of 1 or 2 large bowel movements per day with a “normal” looking stool, I now have 4 to 6 small bowel movements with type 6 or 7 stools*
*Look up the Bristol stool chart if you don’t know what I mean. It has really helped me explain my bowel movements to doctors. I know this sounds gross (and it is) but it is one of the most vital ways for me to communicate the state of my disease.
When I started the antibiotics I was eating my homemade yogurt, which has a lot of probiotics in it. But it ran out fairly quickly and then I didn’t make some again for a while. I just got caught up and maybe a little lazy. Then I started noticing I had more gas and my bowel movements were changing so I bought some probiotic pills to take. I finally made the yogurt again and am hoping it helps.
And now I have a cold. It’s a small one but I definitely want my Remicade infusion tomorrow. Because here’s the thing: I never want to be sick but I am damn angry that I haven’t had a fall since I’ve been diagnosed with UC where I am healthy. Also I have a bachelor/bachelorette party (is there a word for one where both men and women attend?) in Vegas next THURSDAY!
And this is ultimately my least favorite thing about having a chronic disease. You begin to hope and feel you have over come the obstacles of your illness. You make plans. You buy that unlimited yoga pass, you commit to plans made with friends, you plan on trying new things and going new places. I know this may sound negative but I still have a lot of hope and determination. But I also have to constantly gauge my plans and expectations with what is going on with my body. Vegas is still on. I am confident I can get my UC under control in time. But I do hope that I have the courage to not go if I really am not up to it. Lying to yourself and others is so easy to do.