Well, I had a lovely Sunday evening (the eve before my trip to California no less). I am in fact safe and sound at my aunt's house now but I had something called a dystonic reaction. This is much worse than any allergic reaction. I was wary of this drug from the start because SURPRISE! I am the one in a million who had a terrible not to mention horrifying experience with it. In a nutshell, it's muscle spasms. I think that makes it sound cute, however. This was traumatic. I had been feeling restless lately or as I call it severe "boredom". I figured if it was the least of my side effects, I'd take the good with the bad. On Sunday when I was eating out with my mother and sister, I felt claustrophobic. I went outside to sit in the car. The ride back to Minnesota seemed to take forever when it was only 2 hours. After my third dose during dinner, I started to notice my tongue was moving weird. I was lisping and felt like spitting ie drooling. This is when I started to think I'd have to stop the drug. Unfortunately, things went from bad to worse within an hour. I tried to relax my muscles by taking a bath. This is when I noticed my teeth were biting together by themselves. I got dressed. The biting down problem progressed and that's when my mom suggested benadryl, which we had none of. I started to get upset because not only was it difficult to talk, biting down as hard as I was was starting to really hurt! She promptly called our clinic's help line. The doctor on call got back to us 10mins later. She said, yes, my mom should give me some benadryl. By now I was in a lot of pain. I kept biting down and I was grinding my teeth! My mom could hear it. I tried to bite my towel but it didn't do much good. While she ran to walgreens, I was pacing. I must've looked insane. Every minute felt like forever. I even called her after 5mins. I just couldn't take it. I was convalescing by then; shaking all over. And my jaw just kept chomping down as hard as it could. By the time I took the benadryl I was sobbing. I basically turned into a 5 year old. My mom was cradling me and rubbing my muscles but it wasn't getting better. I think it got worse. We were supposed to wait 1 hour according to that doctor. We made it 20mins before I just got hysterical. My head was arching backwards and then my throat seized up. I could breathe but it felt tight. My mom finally called 911. She was afraid to waste any more time even driving me to the hospital herself. I was screaming. I just wanted to be sedated. I just wanted it to stop. Within minutes, an ambulance was there. I could hear the sirens in the distance which was mildly comforting. I choked out a laugh about that. To think they were coming to help me specially. Of course I spent another agonizing few minutes talking to the paramedics and waiting for them to confirm what to do. I kept asking for my mom who was talking to the police officer outside of the ambulance. They confirmed an IV of benadryl was what I needed. A much MUCH bigger dosage than a few measly pills. That was also the most painful IV I have ever had. I was so tense. I could only talk by spitting out words between chomps. Anyway, I almost immediately felt relief. It was amazing. Those paramedics were my two most favorite people in the world at that moment. It was entirely true.
I tell this story not to scare people, but to reiterate the seriousness of what people with Cushing's, especially post-op, go through! You don't usually just get better. Look how much this stomach disorder has destroyed my quality of life. What solution do we have? I know in severe cases you can get a stomach pacemaker. I don't really want to go through that nor do I think I could afford it. I assume it's a special and costly procedure. We keep hoping it'll fix itself over time. This had to be one of the worst experiences of my life. Not being able to communicate is yet another huge fear of mine. Not to mention having no control over the pain I was inflicting on myself. I was so scared. Thank god my mom was there to explain thoroughly. We spent at least another 4 hours in the E.R. My poor blood pressure wouldn't go down so they finally gave me valium- a muscle relaxent/anti-anxiety med. Strangely enough, my ability to eat has been uncanny for the last two days. I asked my gastro specialist if valium helps and he said yes. This leads me and my mother to wonder if I have a nervous system disorder. I've been telling counselors for years that anti-anxiety meds might be beneficial for me. They would always say, "No, you seem to be showing signs of depression, not anxiety". It just goes right through their ears! My poor psyche is taking such a beating, too. I know it's pointless to think like this, but in weak moments I ask myself why this is happening to me. What did I do to deserve this? My poor parents watch me suffer and can't understand why someone as healthy as I was can now be so ill. A few years in college couldn't have done this to me. What's wrong with me? Now my endo wants to check my adrenal function some more for sure. He wants to check my adrenaline, my ACTH. I just had another MRI. No tumors. The gastroenterologist suggests I go on some sort of antibiotic- erythromycin I believe. This is common to take with gastroparesis but isn't known to be very effective and as far as we know I don't have any stomach infections. I'm allergic to a few antibiotics as it is. I'm now allergic to amoxicillin, ceclor, prednisone, and the evil drug reglan. Can we rack that list up, too? I'm not happy because doctors don't just hand out controlled substances frequently. They're supposed to be addicting but so far are the only types of things that seem to make a decent difference. Is it worth it to be on something like this? Can I be prescribed a weaker drug like it? The same goes for pain killers. Dilaudid may be a powerful drug, but for me it's just right. Maybe these things shouldn't be labeled by title but by a person's reaction. I mean, I am so fed up with the medical workers in my college town of Wisconsin as well. They clearly think I'm a hypochondriac or a drunk. And I'll never forget the paramedics that had no clue what my disease was! Lost all faith in them. Also when I broke my tailbone and they gave me oxycodone, not dilaudid. I felt sick every time I took that. They gave me morphine in the hospital but outside of it, they don't take my request seriously. As far as I'm concerned I'm allergic to vicodin and oxycodone, too. I've had it. Somebody needs to do something for me because I can't live like this forever. I shouldn't have to. Give me whatever works. That is the point I am reaching. Do not give me something with the worst possible side effects in the world. I am an unusual case, so take the goddamn hint!!! Please
listen and do something helpful! I am not a guinea pig who is just here to intrigue you or blow off. I am a human being who is suffering more than you could ever know. It's no wonder I've been known to enjoy calming stimulants like cigarettes, alcohol, and even sleeping pills or allergy medicines. They relax me. It's called self-medication. And trust me I am not agitated by choice. I attempt to calm myself all the time. Measured breathing, reading, baths, scented candles, soothing music, spending time in the sunlight, naps. I truly want to be calm and to feel better. I fear people will think I am anorexic soon. I weighed 120lbs when I checked at home. How much more can I lose before it's serious? I know my mom in particular is getting extremely worried. I can't imagine what others tend to think.
The good news: I'm in San Diego and a vacation is the best thing for me.......
BTW,
