As someone with a chronic disease, battling pain is something that I have become used to dealing with. Weird symptoms, new symptoms, and anything in between can become a daily issue. I have been a medical mystery now for almost 5 years, and while I used to go to the Emergency Room if I had a new symptom that was out of control or if the pain became too bad, thanks to nightmare Emergency Room visits, I will only go now if I am missing a limb or bleeding to death.
My first nightmare Emergency Room visit came just one year after my initial diagnosis of Rheumatoid Arthritis (I say initial diagnosis because they have since changed that and now bounce between many different autoimmune diseases, so I reside in LimboLand). I was 35 years old and was on a large amount of medications for the Rheumatoid Arthritis, including low dose chemo, when I began having horrible chest pains. Here I was 35 and with a chronic disease, and now I was having a heart attack on top of it, or so I thought. I was taken into the Emergency Room and immediately hooked up to all the heart monitors, respiratory came in and did an EKG, and while I was throwing PVC’s, no heart attack. They couldn’t figure out what was wrong, so told me it must be stress and I needed to relax. I could overhear the doctor saying it was probably anxiety. Yeah, out of the blue, while watching television, I get hit with anxiety. Ok, so they sent me home. It happened 3 more times over the weekend, and back to the Emergency Room I went, only to get sent back home. It was as if they thought I was crazy and it was all in my head.
Finally, my regular doctor called me on Monday and asked what was going on. After I told him, he immediately had me make an appointment with a cardiologist and have every cardiac test possible. I did, and it turned out, my heart was fine, but I did have a rapid heartbeat which they treated, and sent me home. It wasn’t until a year later and meeting with a neurologist, that I was told that what I had sounded like what they call an MS (Multiple Sclerosis) hug. This was when a new possible diagnosis got thrown in the mix.
Another trip, this time to a different Emergency Room, proved to be yet another test of self-restraint. I went in because I was having extreme muscle spasms and pain in my legs. Nothing I could do would help, including the pain pills I already had, so I had finally had enough and off I went. I get to the Emergency Room and the doctor came in and asked what was going on and I explained everything to him. He got all huffy with me and said, “So I guess you are here for pain pills then?” I could tell by his tone that he thought I was there seeking pills. I looked him straight in the eyes and said, “No, I don’t want pills because they don’t do anything.” He left the room mumbling, and then 15 minutes later, came back in, sat down and said, “Ok, so what is going on?” When he first came in, he thought I was drug seeking and didn’t have the time to even look at me, but once I told him I didn’t want pain pills, but wanted something to help what was happening did he actually take the time to exam me. Now, I am sure you are saying, “well, maybe he had a bad night”, and that is a fair assumption and one I could have believed, but I have seen him 3 other times in the Emergency Room for different symptoms and been treated the same way each time.
I realize that for regular doctors, understanding an autoimmune disease or some of the issues that we have may be past their realm of medical knowledge, there is no reason to treat us as if we are crazy or seeking drugs. (I mean really, I was already taking 36 pills a day, do you think I really wanted to add more to the mix?) So, while I think hospital Emergency Rooms are great for treating broken bones, large bleeding cuts and things like that, I have learned that going to the Emergency Room for anything remotely related to a chronic condition ends up being more of a test of my patience and only seems to make whatever I went in for worse. So, as I have told my family, unless things are broken and the bone is coming out of my skin, don’t let me go to the Emergency Room again.