This is a day in the life of Santabelle, he, he!
I hope we can all find humor in this story and the things we do for love!!!
My boyfriend, who is a commander in the Coast Guard, just suffered a seizure due to epilepsy. Ultimately, he cannot drive for six months, so I take him to and from his numerous doctors' appointments at the Walter Reed Hospital in Bethesda, MD. I dropped him off last week for one of his doctors' appointments and went back home to wait for him. When I came back to pick him up, I couldn't reenter the hospital building because I am not part of the military, so I was waiting across the street at the "kiss & ride" (Metro) in Bethesda. Since I do not have AC in my vehicle and it was 104 degrees outside, I was rather warm, so I decided to wait outside for him under a shady tree. Well, long story short, I locked my keys in my vehicle, agh! I called AAA, who came an hour later, and they were able to open my door in a split second! My boyfriend, at this point, was still at the Naval Hospital waiting to see his neurologist. Again, let me remind you, it's still 104 degrees outside! I am melting, but I'm still trying to act cool as in "groovy". My ostomy bag is really filling up at this point, and I had to start supporting it with my hand like a baby. The National Institutes of Health (NIH) is located directly behind me, so I made a snap decision to enter the building. What else could I do? After all, when you have to go, you have to go. I entered the building, went through security, signed in. Security guards asked me which building I was going to and what my purpose was for entering NIH, and I answered, "I have to go to the bathroom, and any building that has a restroom will be fine," not kidding! Whew! I got to use the restroom and walked back to my vehicle proudly wearing my name tag.
Later that day, I had to drive my boyfriend to Union Station downtown in DC to the Greyhound bus terminal so he could catch a bus back home to NJ. Again, it was 104 degrees outside, and I might add the bus terminal had no AC. Some benign fans in the building were blowing warm air around, big deal!!! My boyfriend's bus was two hours late, agh! I left the station eventually after he caught his bus, hot, tired, and bedraggled at this point. I got lost in not a very nice part of town trying to find my vehicle. A bum asked me for my only bottle of water. I made a snap decision. I had to tell him "no" because I needed my bottle of water more than he did (plus there were people giving out free bottles of water at the station). I got lost again driving around in the city trying to find my way home! When I finally found Rt. 495, which is near my home, I almost stopped and got out of my vehicle to kiss the pavement! Soon after, I met my friend Millie to vent, only to have my poor ostomy bag give way because the adhesive on my ostomy bag had melted in the mere heat, and all the contents were flushed out all over my cute white summer pants!!! On the bright side, OxiClean works really well!!! Ahh, again the things we do for love!

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We conducted a survey to better understand the impact that living with an ostomy has on sleep.
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We sat down with two influential people in the ostomy community, to find out how they cope during challenging times.
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