So, I've had a lot of migraines this summer. And last week I had one that wouldn't respond to the migraine meds for nothing. My neck had been inflamed pretty bad and my eyes too and both were triggering migraines. I went to the GP. They gave me a shot of medrol. But within an hour I couldn't take the pain anymore. I ended up in the ER. They treated me with toradol, benadryl, and something else. I was sent home. Slept two hours. Woke up in agony. Went back to the ER. They did a CT and found nothing. Treated me with the same stuff again except they gave me something extra to help the arteries open up more and one to restrict them which sounded weird to me. I go home and sleep six hours but ohhhhh.... could not get out of bed. I was told to follow up with my rheumy but I'm thinking the medrol needs time to kick in. Silly me! By the weekend I was still feeling so rough. Pain at the base of the head...in that joint. When I lifted my head for more than five minutes it would burn, searing pain, and it would travel up my head and around my eyes...and whenever I would do anything that put strain on my eyes or dry them out more like reading, they would hurt so bad that it would travel around my face. Before the weekend was over, both jaw joints were in agony. I tried everything... and have found that it's harder to get ben gay out of hair than I thought it would.
So Monday is labor day...no one was there of course at the doc's office...stupid me. I call Tuesday and get the doc's nurse. A nurse I've yet to meet there who kept saying baby and honey to me so much I couldn't stand it. She insisted I come in the next day. I told her no way, not in the shape I'm in, 2 hour drive to her office, and there's no way I can miss anymore of my classes. I have to force myself to go in Wednesday and at least stay five minutes so I'm not counted absent. I explain this has happened before and the doc called in some steroids and I was right as rain in less than a week. But she didn't hear a word I said and kept insisting this was horrid and scary and she would be afraid to even ask the doctor about it. So that revealed she hadn't even discussed it with her and I asked her could I have my doctor's opinion please?! She said she would try to ask her and get back with him. Late that night she called and said she talked the rheumy into calling me in a script seeing how bad off I am and the hours I would have to travel. No way that's true. I know my rheumy and once she heard, she said call it in. She talked to me like I was five years old with instructions on how to take it and if it's not better within a week I need to make an appointment with a neurologist or call the doctor back..."okay baby?" Ugh. The next day my lovely steroids were waiting for me and here we are at the end of day two and significant improvement just as before. I love my doctor and some people who work for her hear what I say but some of them, honestly... I'd like to ask them why they chose to get in the profession because it requires listening...and I don't mind being called honey but I hate being called baby by anyone other than my husband and she babied me over and over to nausea.
I got really behind with my classes. I get in touch with my ADA rep at the college but he's out of town for a while. So I personally emailed each teacher and told them I am a provisional student and applied for more time to turn in my assignments last quarter, and I explained what had happened recently and I was just now getting back up on my feet but behind in all four classes. I explained my husband is reading to me because of my eye damage but I'm not an auditory learner and he works night shift so it's slow going. Even made sure they knew it was bad enough to make me have to go to the dreaded ER and I was dead to the world for three days and miserable for two...(so much for celebrating my bday on labor day weekend...lol.) I wanted to know how much time I'm allowed to get my assignments turned in and take all tests. All teachers were great about it... except one. And it's a teacher that had made it adamant over and over to us the first day of class that she doesn't not accept late work for any reason! Not any any any! And she loves to pour the work on too which I don't mind... I like the subject a lot. She emails me back that she doesn't even know what provisional means and I have to turn in work on due dates. Now, I know my ADA rep told each one because I have a copy of his email to all of them. I emailed her back that she should have gotten that and not sure why she hasn't, but I'm supposed to get more time to turn in assignments when I need it. I told her this doesn't happen often. The past several months have been much better for me but sometimes my immune system just goes haywire and sometimes I can push through it and sometimes I can't...this is a time I couldn't and at the rate I'm going now, I'm pacing myself still. I'm not 100% but on my way and I could rush but I would rather get it done right and make the grade I know I can make. I left a message with the APA Rep. There I sat trying not to get upset about it. It just gets so tiring when people don't listen especially when it's about your health and you're miserable and worrying about what you're missing while stuck in bed. A while later I got a message from the teacher who said she gets it now... and that was it. Okay...she gets it. But how much time am I allowed from her I still don't know and waiting. I decided not to worry about it anymore. My ADA rep said if I have any trouble with anyone to let him know. I think I'm allowed something like time and a half of when it's all due, but not sure and not certain I will finish in time. I have three other classes to catch up in AND do the work load she laid out for us too. But why is it so hard for people to hear what you're saying when it comes to health? I often wonder do I have a whiney voice I'm not aware of and it just bores them? But everything else I say doesn't seem boring. So it's about the health issues and people get tired of hearing it I guess. I've accepted that some of my friends and most of my family don't really mean to find out how I am when they ask...they're just being "something" about it really...don't know what but they aren't really interested in hearing I'm dry as a bone and aching but okay or I'm miserable today and have to stay in bed. I can accept that people generally don't want to hear negative news and just ask to be asking. But the professional world....I'm still dealing with that and not too well. Any advice? Any encouragement to help me think back on the next time this comes up? I'm sick and tired of it.
I've got an appointment next week with my eye doc...and I hate to tell him but after nearly a year of this regimen for my eyes, they still dry out easy and ache like the dickens on the tops. I'm ready to bring up the obvious need for a change in the plan or adding something like maybe steroid drops for my eyes when they get so bad... they need to heal up better than this ...it's been a year in his care. He has usually seemed like a listener...but when you bring up stuff like steroids a lot of docs in my experience won't even go there...it's too dangerous. You'd have to be really really really bad off to get a script of steroids. And I understand why but it's been a long wait and I really need my eyes to be better or graduating is going to be a very long hard road and at times I wonder if I'm going to make it. My eyes are so damaged and so much sets them off. I'm typing this out without looking and then have my daughter check it. Lol. It's ridiculous!
Is there some trick to getting people to listen to you and really hear you out? I don't care if relatives and friends don't but people in the professional world that I need treatment from is different. I know better to even try to work with some doctor that won't hear a word I say. It's pointless and I just walk out and never return. But when people half listen and you do what they say and you try it...and you wait...and you wait...and you wait...and the same ol thing just isn't working? Or when a nurse gives you the impression she's talked with the doc but then reveals she hasn't and doesn't want to, even after you tell her we've done this song and dance before...baby.... I need some direction about because I just want to slap and say nasty things. The nurse didn't even hear me say the ER did a CT or anything.