Scary Things

Today I went in for another Remicade infusion. It took 3 tries and a couple of different people to get the IV in.... not including blood work later,... that was only 1 stick. About 40 minutes after getting the infusion underway, I had a reaction and it was scary. I had a hard time breathing and my face and chest flush red and hot. The nurse stopped the IV for a little while to see if I would feel better. I eventually did and after they consulted the doctor, they piggy backed another Saline to the Remicade and made it go slower so i could get my "meds" in me. What a seriously scary experience. Being that there are only 3 or 4 Biologic meds out there right now, I have to have this work as long as I can,... or at least until we can make it out to Colorado.... (for the whole "alternative medicine" thing) and I can get off these Big "Meds".  

Having a "Chronic" disease like Crohn's, you tend to feel backed into a corner,... trapped. 

If you don't take meds, you can go into a flare up, bleed out, severely dehydrate and potentially die. (Yes,.... it has killed people) 

There is always a feeling of being a slave to medicines, doctor's visits, and the constant fear of not finding a bathroom in time. The feeling of Peril comes when, You know you have to take meds or flare and possibly die from it all.... or take the meds and have the crappy side effects. Let me remind you that Remicade is a "CHEMO" class drug. Some people have lost their hair from it, developed other serious conditions or even cancer. This is what I really really want to avoid. (Thus creating a GOFUNDME  so I can raise funds faster to get out there ASAP for "Alternative Medicines")

My friend made a post a couple of days about about her being the 1% of people who experience "Crohn's Like Symptoms" with this certain antibiotic and she told me I was Superwoman to put up with such things on a daily basis. At least she will be back to "normal" after a week... but it was nice for someone to get a Glimpse of my world.