Anyone who lives on the east coast or has access to a TV knows how much rain we got Thursday night into Friday morning. Needless to say, between being paranoid I was going to oversleep and miss my Friday appointments and the loudness of the rain pelting at the windows, I didn't sleep, AT ALL, which made for an interesting day.
I left Philly around 5:30 AM and it was still pretty messy out. 95 was really hard to drive on actually and you could barely even see the lines on the highway. And forget about trying to pass a truck because the rain coming off these things made it impossible to see. But wonderfully it was towards the end of the storm and by the time I got to Baltimore I could see the sun...well, almost.
The infusion, MRI, and doctors appointment went smoothly. It just made for a VERY long day. My brother and I had to drive to Lancaster from Baltimore to pick a new (old) car my dad got from his work and then drive back to Philly. All-in-all it was an extremely long day but I slept like a rock once I got home.
Now of course nothing can ever be perfect when it comes to Crohn's. The week before my infusion I was doing FABULOUSLY. I mean, extremely well. For a week straight I had zero symptoms. That's probably the longest stretch of time in two years that I haven't been symptomatic. So obviously it got me very optimistic about this scope in November going well. But then, of course, I had to go and eat an apple.
And it was delicious. But I inhaled it. I had been babysitting all day so I didn't eat to avoid attending to Stevie and I was famished. I was thinking about that apple the whole day I was gone and I couldn't wait to eat it. I know it sounds silly but I just love apples and I haven't gotten to eat too many in the past year.
Well, I must have done a bad job chewing because I started getting symptoms of a blockage. Not to give too much detail but you can imagine that those kind of rubbish things we all eat do not really get broken down by our bodies so it's pretty much coming out of me the way it went in. That's why people with ileostomies and Crohn's in particular have to chew very well. Our intestines are sometimes swollen, thereby making it harder for food to pass. We often have scar tissue that likes to wrap around our bowels so the smoother our food is, the easier it is on our intestines.
It was about three days of varying pain. Sometimes it would be dull and other times it would be very sharp and unbearable. The good sign was that my ostomy was still active and functioning, so I knew my bowel wasn't completely blocked somewhere. I did start getting alarmed when I got a pounding headache and started throwing up, but I still didn't call my doctor. In retrospect, I probably should have, but I am so familiar with these things that I pretty much knew what I had to do. So I stopped eating solids for a day and took in A LOT of fluids. It took a lot longer than usual for whatever was stuck to pass but things definitely got flowing again and the pain went away JUST in time for my appointment yesterday.
So I mentioned this little hiccup to the doctor who administers my infusion. And you know what she did? SHE WROTE ME A PRESCRIPTION FOR PAIN MEDICINE.
WHAT. THE. FUCK.
She wrote the script like it was nothing. She told me she knew I wasn't in pain anymore but she wanted me to have it in case something like that happened again. She said there was no reason for me to be in any amount of pain or discomfort.
Now for those of you who don't know why I freaked out about that. Let me refresh your memory. Basically, for that whole year I was in bed, losing 50 pounds in 2 months, having my hair fall out, throwing up every day, crapping myself, being in the worst pain of my life, etc...well my doctor would not give me pain medicine. He didn't even suggest that I go to a pain management clinic or anything. It was pretty much, "We're going to treat your symptoms and if that doesn't help your pain then we need to try something else to treat your Crohn's". And you know what? That might be an OK philosophy for someone who is suffering from Crohn's and able to live their life with some adjustments, but when someone is drastically ill and spending weeks without even stepping outside their house, it's time to give out some friggen pills.
Ugh. I guess the whole thing just goes back to me having a lot of regrets about wasting as much time as I did with that practice. And I'll always think back and wonder if my disease would have progressed that far had I stayed with the doctor I am with now. It's something I beat myself up over all the time and I know I need to just put it behind me. I did what was easiest and made sense at the time.
When I was waiting for my MRI in the room where all the people actually getting MRI's are waiting in their little gowns, I was talking to this lady from Lansdale. Lansdale is a suburb of Philly. She was telling me how she, too, travels all the way to Baltimore for treatment because she loves her doctor so much and the care she gets there. And that was really comforting to me. Cause sometimes I think people think I'm crazy for traveling down there as much as I do. But really, I would tell anyone, that you can't put a price on a good doctor and I never realized that until recently. Even though I've had tons of bad doctors before I started going to the University of Maryland Medical Center, I just assumed afterwards that because I was going to a doctor who worked at a very reputable hospital that I'd be happy. And not to say anything bad about my doctor from last year but his style and his practice just didn't work out with me. It wasn't like I felt neglected or unmonitored, but they didn't have a holistic approach and I think that's what I like about Maryland.
Ok, so back to my point that I was trying to make before I rambled.
I just like that I feel very cared for right now. And that's how you should feel when you have a chronic illness.
That's all for now. Oh, and how great is candy corn?
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