A Writer's Life Interrupted #crohns #ibd #uc #arthritis

Two weeks ago or so, I woke up in the middle of the night with my heart racing enough to warrant a trip to the hospital. The following day, my doc thought it might be a good idea to increase my blood pressure medication because my heart rate was still in the 100s and my blood pressure in the 150/90 area despite additional medication. While I was suppose to be improving as my blood pressure finally dropped into the 88/60 range (way too low) my heart wasn't getting the message. My heart rate ran passed the 90s and went straight into the 100s topping out at 120 even though I was on Carvedilol which is a beta blocker. Both tachycardia episodes were like having an epic panic attack except my brain wasn't panicking. Only my heart.

 I have a lot of pain and pain raises blood pressure and heart rate so my doc said it was imperative to get my pain under control.  Crohn's disease comes with pain. Crohn's arthritis comes with pain and osteoarthritis comes with pain. Crohn's arthritis doesn't damage the joints, but osteoarthritis comes with some nasty damage and major pain issues. I was diagnosed in my 40s when I went to the docs complaining of what I thought was muscle pain. I have knots on my fingers now and my little finger no longer straightens out. My thumbs, neck,  and lower back are the worst pain instigators. I keep on writing though, as the doc says exercise is good.

There are times I cry and feel sorry for myself. Sometimes I even hate myself for this weakness. The type of arthritis I have is hereditary. As I age the pain is fast approaching the intolerable range which is making my blood pressure creep up as it makes my heart race. Pain messes with your mind and my immediate reaction to severe pain is anger. I hate pain and I do not want to take pain killers, but I also want the pain to go away. Worst of all, I want to do what I want to do and not be limited by disease. This is an unsolvable problem that I must come to terms with. The answer is in taking pain medication. Problem is I can't take ibuprofen because it makes my intestines bleed. I can't take aspirin for the same reason. I can have Tylenol but it doesn't touch the pain. That leaves me with Tramadol and I hate Tramadol. It takes away the pain but makes me feel weird.

Exercise is as much my enemy as my friend. I keep a pretty rigid exercise program.  I even gave into Fitbit so I know exactly what goal I've reached each day. After resting in the evening, getting up is excruciating.  My legs are starting to get weak and I cannot allow that to happen. There is too much I want to do in this life to give up now.

Remicade (an infusion drug for Crohn's disease) is this Friday.  My doc gave me the OK to have it as long as my blood pressure is stable. My one reaction to Remicade is that is causes my blood pressure to fall which is why I can't be fast tracked. I was terrified I wouldn't be able to have treatment because of my current issues, but my doc said to inform my nurse to keep a close eye on it in case we run into problems. Does the infusion make me nervous now? Ah, yeah. It does.

BUT, I am fortunate enough to have had Bobby in my life. Let me tell you about him. Bobby was physically and mentally handicapped and my in laws took him in when he was in his twenties as his family didn't want him anymore. When my mother- in- law took ill, Bobby came to live with us.  I kept my eye on him because he too was in a lot of pain. He could hardly walk and needed a cane and/or walker.

One day, while he was on our from porch doing his famous chicken dance I asked, "How do you do it Bobby? How can you stand the pain?"

He looked me straight in the eye and for a moment he appeared much older than his usual self. He said something I will never forget. He said, "You gotta walk through the pain, Lucy."

Bobby used to get angry and we never understood why. Except for the rare occasion, he wasn't articulate enough to put his frustration into words. I now know his anger. Bobby was and continues to be my inspiration. Even when you would have though it physically impossible not to do so, he never ever gave up.

Neither will I.