Chiari Online Support Group

Its been a rough week


This week I landed myself in the ER in what must have been the worst hospital ever. I was feeling really bad to start with then decided to get out and about to get some things done. I have a trip coming up for my medical situation, while the appointment is not set yet it is coming up. They are just waiting on some releases now. So I had decided that I was going to a very cold part of the country and I wanted to go to the city to hit my most loved second hand stores for some warmer digs.

So after a brief stop in at the tire shop to have the car checked over we headed towards the city. I was only able to hot one of the stores I love up there and then I had a major episode and scared several people which in turn sent me to the ER. Well, apparently I ended up at city general. I will not go into too many details about sitting there people watching as no matter how I say it, I am sure it would be taken wrong. Just think, the people of Walmart were all up in the ER. I sat there for seven hours in the waiting room not allowed to eat or drink and these people in all their glory are all up in there with these family size bags of chips and their sugary drinks while I as hungry and thirsty.

Finally after seven hours of waiting I was called back to a room and the nurses were fine, then enters the snottiest doctor I have ever seen. I believe she was a intern or something. I explained my situation, and she wanted to play like we were in a English class and work on story building. I explained what happened, the girl with me explained what happened, and the doctor was using her hands to help her talk and I really felt like she was trying to coax more out of me. And there was really no more to say I explained it all. She kept on and on and I finally looked at her and said " I have explained this as best I can as has she (speaking about the girl with me) I don't know any other way to explain this and neither does she. We are not in a English class and I am not playing story building with you"

The ER doctor then went out of the room and then a bit later a nurse came in with a bag of fluids and was also going to put meds in it. I ask what meds and she had a steroid, a toradol and a antihistamine. I ask what these drugs were being used to treat. That could not be answered. I ask, so I am being given meds but there is no DX so what are we treating? Out the nurse went and spoke to the doctor then back in she came. I told her I was refusing the antihistamine, she wasn't aware I could refuse. I explained that I do not like antihistamine and if there was not a particular diagnosis that it was being used for I did not want it. So I refused that.

More time passes on the bag of IV that was on the highest drip was gone and blood was backing up into the tube. We hit the call button and it buzzed and buzzed for 5 minutes. Eventually they answered and we explained what was going on with the vein, they said ok. A hour later they had not come in to check on it. So I got up, took the IV out and got my things together and came out of that room and told that doctor I demanded her information because I was filing a huge complaint the next day. She told me I could not do that. I had taken pictures of everything that was happening, as well as the white board so I did have her name. I stopped in at the exit desk and told them I was not paying a copay today and in fact I had the mind to sue them all and I would be calling the administrator the next day and I walked out.

So several people were miffed at me for leaving (family and friends, but they were not in my shoes) . But at that point I had been there for 10 hours, I was thirsty, I was hungry, I wanted a smoke because of the stress and I just mad beyond words. I may have even been foaming at the mouth by this point.

So I left and started the 100 mile journey back home in the middle of the night. The next day I made some phone calls and have explained its all been notated and if I get a bill I will be suing the hell out of them. I enforced this was not a joke. The administrator was very kind and said they will be in touch soon as they agree that this ER visit was not good service at all. I have no idea what will become of this if anything, I just know I have no problem turning everything over to my lawyer.

I am back home now, and slept for the next two days because the pain was so intense. And just mad as heck that I had this episode and made the 200 mile round trip, spent all that wasted time up there and still did not get any darn warm weather clothes to wear on the upcoming trip. And that is how the cookie crumbles! Its the story of my life.

Today was quite stressful, my husband called me up and his mother had called him stressing him out on the road and starting drama to which I ended quite quickly by proving she was wrong and I was not about to have her inflicting that stress on us with him working and me being sick. I have no idea what got up her butt today but she picked the wrong day to start in because he was tired from the week and me, I am still in a lot of pain. Todays episode ruined the last two days I spent in bed trying to recover from the episode and adventure of the week and just when my body was starting to not feel as much pain it went into stress mode making everything start hurting at extreme levels again.

Hopefully this weekend can get better and the coming week will bring some relaxation for me. In the meantime. I am going to lay up on the sofa and shop online! You know, there is a slight advantage to not being able to sleep when in pain, you can score really super nice stuff on ebay in the middle of the night when no one is awake to bid against you and there are items ending in the week hours! Todays score... A Simply Vera by Vera Wang top for $8! SCORE!

The bright point of the week...

I got a happy box in the mail with puzzle books, candy and a candle.

I got my birchbox

I got my Ipsy box.

Its the small things in life that make you feel oh so much better.


I would find an attorney while you’re still mad!!
I’m glad you refused medication, took out your IV, and left. Obviously you had a bunch of idiots “caring” (using that word loosely and sarcastically) for you.
I can’t drive, haven’t been able to since my chiari started 5 months ago. When my hubby does get me out (when my body feels up to it) I take my walker so I can sit if I need to. Maybe you need to get one? Would certainly beat the worst ER trip ever recorded!!!
Hugs and prayers from Houston!!


Honey, they were terrible. I understand I ended up in the center of a major city and they deal with a bunch of dope heads there but I am far from a dope head.

I cannot drive either. I have a girl who stays with me around the clock and only leaves if I have someone else who can take care of me so she can go see her boyfriend. A lot of times I cant even get out of bed. Ive been sick for several years but only homebound for two and a half years now