Crohn's and Dysautonomia Awareness Month #crohns #dysautonomia

 IF I had known my latest infusion of Remicade was going to make me as sick as it has, I am not sure I would have had it done. Just knowing I have to do this again in 4 weeks scares the shit out of me. The reaction started at the halfway point of the infusion. For those who do not know, Remicade is given by IV in a hospital setting. So, halfway in this odd, scary, dark, sensation washed over me, halting even my breathing. It took just a few seconds for the feeling to leave, but it left behind a sickness I've had a hard time describing to anyone. How do you explain to someone that you feel dark? Of course that wasn't all, I was also nauseous and I had a headache along with a lot of bleeding and incredible muscle weakness. 

I expected to feel better on Sunday, but when I woke up, I didn't. I do feel better today, but I have to stay on top of my autonomic medications or  I will be completely out of it. I don't like feeling this way. It's bad enough I have to deal with Crohn's and dysautonomia much less side effects from Remicade. I am not a good patient. My husband knows me well enough to not tell me what to do. I tried to have a sit down conversation with myself, but I am not a good listener either. I am annoyed as hell that this shit gets in my face on a daily basis. 

Living with a chronic disease

I have the most awesome family. They know me well enough to send the daughter-in-law with me shopping in such a nice way, I hardly notice I am being watched. If you are my friend, you know that when I disappear it is because I am sick. You are used to me saying: it depends on how I feel. You are used to me cancelling fun stuff so I can stay in the house vegging. Last night, I felt sorry for my husband. I could not move.  I was laying in bed a drooling non-entity wishing for death. Seriously, this was a very uncomfortable feeling. 

Guilt assails me regularly.  I posted a picture of myself on Facebook that showed the weight I'd lost. I haven't been able to see my collar bones in years. Now they stick out.  I studied my lines and wrinkles, my thin hair. Good lord, I didn't even recognize myself.  I had to darken the picture before I posted it so I didn't scare myself anymore than I had. Because of my limited food intake, I will be back to the hospital in 4 weeks for another infusion and a few more lost days, all in the name of health. On a side note, why am I surprised I would react to a mouse antibody?

Remicade really messed up my autonomic system too. That is the part of your body that works without you thinking about it. My blood pressure was in the toilet. Like 60/40 which explains the drooling idiot feeling. Then my heart rate would jump up to 150 before dropping to 40. The scary part was I didn't even know it was happening, but was caught by a monitor on a wrist watch for heaven's sake. 

I am now back to editing the best book I've ever written. I am a student of the esoteric and I love all the ologist sciences. I am obsessed with the future and with the state of our country and beyond.  I love when my imagination takes off and I am able to get lost in whatever chapter I am in. Seriously, I was made to write. 

Thank you for stopping by. Stay healthy and remember to treat your chronic disease person with love. 

Shalom