I am so exhausted. I had the best month of August really in years. The chemo was doing an awesome job and I was going anaphylactic less than ever. I was feeling so great I was able to hit the gym and swim, lift and even ride the recumbent bike. I took the metro mobility BY MYSELF out of the house and everything to the gym 3x a week! I was eating lots of different foods without pain, blood or vomiting and I through I was really winning at life…
My brain went nuts. I went to the ER 3x in 3 days because I had the worst headache ever. I was incredibly ill and couldn’t see quite right, my neck and back was all stiff and sore and I couldn’t really comprehend the world around me properly. It was super scary, but I didn’t know what the problem was…
The ER staff struggle. I get it. I am not a broken arm or a cardiac arrest, I need a doc and team that think outside the box…BUT…
The first time they just sent me home telling me to rest. The second time they sent me on my way after getting injections into my neck…which began the peril of death. I reacted horribly to them. My body decided that the injections mixed with the prednisone I was taking was just too much and attacked my brain. I literally do not remember September 2-9, 2016.
From what I hear I was a horrid hospital patient. Thankfully I emailed the great Dr. Afrin from the 3rd trip to the ER and he knew exactly what was happening. Its crazy. I don’t remember a damn thing but I do remember waving and smiling when I saw his curly hair come into my hospital room…
More than four days I was completely out of it. I was mental. I did things that I would never do in real life…I accused my roommate of stealing my toothbrush and toothpaste…now mind you, I was on the oncology ward and so my roommate was an elderly frail woman…how pathetic was I!? I was walking naked, they had to put bed alarms on me and yet I still refused to simply lay in bed. I was a mental case. My brain did not function properly to say the least.
In fact, Its taken me a week to even sit down and write this all out…I am still not quite right but I am a whole lot better. I was sent home with a PICC line, aka an IV into my upper arm that delivers meds 24/7, continuously. I have a button to press when I get a headache and it gives me an extra dose. The craziest part? The medicine is BENADRYL. I am on 24/7 Benadryl infusion to keep my cells from acting like plain old lunatics.
I am pretty tired but incredibly thankful for so many things…they could’ve gone so much worse. I am grateful for Dr. Afrin and for him not only recognizing what was happening but knowing the treatment and being so patient with me in my delirium. I am thankful for my parents and their medicine skills, as they have had to step up majorly and help me with my infusions and such.
Most of all, I am thankful for Josh because the entire time I was out of consciousness in the hospital, actin a fool, he was finishing up our MOVE from our townhouse to our house…well, I should say, he finished all the paperwork, packed up the whole townhouse and put it into moving trucks.
Those of you that know me well know that I am a bit of a control freak and micro manager, but JOSH DID IT ALL. He completely stepped up and handled all the stuff like a boss and even split his time coming to visit me and care for me in the hospital.
SO, I am at my parent’s house still, quite ill and weak but getting better each day. I was having a horrible gastro reaction o the 125mg of prednisone the dr put me on and now that we’ve changed that manufacturer I am finally able to look in the mirror and not appear green.
The last 2 weeks were a shit-show but my family pulled through and I cannot put into words how amazing that is to me. Joshua’s mom and aunt, my parents, Josh, our realtor, loan lady everyone worked their asses off to make this house transition as smooth as possible with my crazy self causing chaos in hospital.
I really need to write those nurses a thank you…I hope that they know that isn’t my normal personality and I don’t act a mess like that when my brain isn’t having issues…yikes. Embarrassing.
So now what? WELL, we need to paint every square inch of our new house. Literally. EVERY INCH. We also need to remove some old nasty carpet and get the ducts cleaned up before I can go move in healthily.
I am so tired. I am not sure if I can properly get that idea across. My body is so weak and fatigued yet; I can’t sleep at night because of the high dose of prednisone. LOL. LIFE hands me lemons and dammit I am making lemonade. My lemonade might be a little tart right now but the team I have behind me will make it perfect in no time.
I am loved, even in my crazy, messed up, naked wandering brain hospitalization, I was loved.