We knew something was VERY wrong because when I woke up around 8 a.m., I had double vision and the room was spinning like I had been on the Teacup Ride. I closed my eyes and tried to relax, convincing myself that maybe I sat up too fast and my pressure shifted (though nothing like that had ever happened to me before). When I opened my eyes about a minute or so later, my vision had improved, though still blurry, and the room had stopped spinning, but my right side had gone heavy/limp/paralyzed. I reached over and grabbed my cell phone to call my Mom on the house phone. I then realized that I could not keep my head from flopping back towards the right, and my tongue was also shifted towards the right. All I could say into the phone was a slurred "wrong". My Mom came rushing into my room and she tried to do the typical neuro tests on me, that we know so well, and that I can usually do with no problems at all. This time, however, I could none of them on the right side. When she asked me to smile, she knew something was terribly wrong...my mouth went up normally on the left, but stayed in a straight line on the right. That was when she called for the ambulance.
I was EXTREMELY lucky! This medication can only be administered within the first three hours after exhibiting symptoms, and I was given the medication at the two and half hour mark. My symptoms started improving each hour after that...slowly...starting with having more strength in my hands, and moving the right side of my mouth...the last thing to come back was the strength in my leg, which was back twenty-four hours after the TIA. I was in the hospital a total of three days.
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| Picture when my mouth was finally starting to smile normally! |
On the last day, the neurologist told me I NEEDED to take a blood thinner to prevent this from reoccurring. The problem, I told her, is that I am allergic to NSAIDS. Last time I took one I had a Steven-Johnson reaction, which is a very serious skin rash that can turn deadly if left untreated, as sores can form on internal organs. I was told by a dermatologist that I was LUCKY to be on steroids because it saved me from having a more serious reaction and organ damage. Well, this neurologist believed that if I took a baby aspirin, only 81 mg, three times a week, specially compounded to have no inactive ingredients that could make me ill (since the OTC brands all have talc's and starches that irritate my lupus), I "should" be fine.
I really need to start taking my own advice about being your own advocate! I listened to this doctor...I had this aspirin compounded, paying $22.00 for fifteen pills of baby aspirin to hopefully prevent me from having future clots. She truly scared me that if I did not take this, another clot could, indeed happen. I knew the risks, though...and I took the pill anyway. Less then an hour after I took the aspirin I felt the burning/itching sensation up the back of my neck...it quickly went into my throat and into my nose and eyes. My Mom took me back to the ER where I received an IM (intramuscular) injection of benedryl (which in my opinion does NOT work as quickly or effectively as IV benedryl), dissolvable zofran for the nausea (again, not as effective as IV), and my own muscle relaxant for my throat spasms, since they would not give me anything for that since I refused solu-medrol.
I DID advocate for myself by refusing solu-medrol! There was NO WAY I was getting another 125 mg injection of steroids and then a medrol-dose taper for a medication that is supposed to be out of the system in four hours. I knew I needed the benedryl that went directly into the body...as my stomach does not absorb things properly on a normal basis, and I was so nauseous, I had no idea if I could keep down enough oral benedryl to make a difference. The ER doctor did not seem pleased with me that I refused the steroids, just like the neurologist was not pleased when I told her I could not take aspirin. I relented on the aspirin and put me right back in the ER with a severe allergic reaction!!
From now on...I am not going to care what the doctors think about me! I am going to SAVE MYSELF!! They do not have to live in this body, I DO! I will let them know the reasons as politely as possible, but I will not back down. This is my life, and let me tell you, I WANT TO LIVE IT! It is high time doctors learn to LISTEN to their patients, and understand we just want to LIVE and be HEALTHY with the LEAST amount of side effects possible!!
Hello Ivy,
ReplyDeleteThere's no question about it: you went through quite the ordeal, all right! I admire your bravery. And you're a tough little one too!
I think it's great that you've gotten to know your body so well, and even greater that you're listening to your body and following your intuition. I like to think that doctors (most doctors anyhow) mean well, but, unfortunately, the frightening reality is this: doctors "practice" medicine. Period. Sadly enough, their knowledge remains generally limited to the status quo of the medical profession, which, far as it has evolved over the years, is still very much in the Middle Ages. And, if that isn't enough, doctors often have a tendency to be extremely arrogant and opinionated; they save a few lives--some of them do, sometimes--and right away they have a G-d complex. You, meaning WE, have to question EVERYTHING! And, just as you did so bravely and effectively, WE have to listen to our bodies. I agree with you 100%. When it comes to our bodies, only WE know best. WE really HAVE TO learn to be better talkers and doctors really HAVE TO learn to be better listeners. It sounds to me like you're off to a really great start.
Either way, I'm super glad to hear you're feeling better. It was a quite a scare you gave everyone, but you handled it like a pro. Great job, little lady! You're living proof that dynamite comes in small packages. ;))
L'Chaim!
Bryan