When the ER Cannot Help You and Your Autoimmune Disease

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Where do you go when you feel the worst you’ve ever felt in your life? Where do you go when you feel like you need immediate medical attention or something bad is going to happen? The last resort when you just can’t handle it anymore? Most of us would answer, the hospital!

Well that is where I went… and they couldn’t help me. I don’t know why, but I was surprised this time. I really shouldn’t have been, because for many years I would end up in the ER with all different reasons prior to my diagnosis. I thought since I know or at least my doctors think they know what’s wrong with me, it would somehow be more helpful and I might get help. But even when my husband was driving me to the hospital we both said, we wouldn’t be surprised if they didn’t find anything but it’s better to go and make sure than to ever put your life into jeopardy.

I went because for almost a week I felt like my body was going to give out, like I couldn’t hold on. I felt like my body was being invaded and there was nothing I could do to stop it. The weakness that came over my body was something I’d never felt before. I was petrified.

When I got to the hospital I told them my symptoms and told them I have an autoimmune disease and basically all the fun details of which ones I have and what I’m currently being tested for. Once I got to my room, a nurse came in and I told her the story again. She looked at me with sorrow on her face and said to me, “We are only as good as our tests, and you’d think here in the ER we would be able to figure out anything, but that’s not true – and I’ve seen many people come and go through here with no answers and I’m so sorry.” She went on to even tell me about her friends who have autoimmune diseases and their same experience.

Next the doctor came in, the person I am hoping is my savior at this point. To myself I’m like, “Please find what’s wrong, fix me, make this feeling go away!” He was sincere, nice and seemed like he wanted to help. He told me a similar story as the nurse but said we would search high and low to see if I had any hidden infection that maybe my chemotherapy could be masking. Since I felt faint they even checked my heart. I did a series of blood work, throat swab, EKG, chest x-ray, urine analysis and was monitored for hours. The strong feeling would come over me while in the hospital bed. I was praying to God saying, “Please save me,” something must be terribly wrong. I was even telling my husband how much I loved him and how I had never been more scared in my life with this feeling.

Hours later the doctor came back in the room, he said the most bittersweet words I have ever heard in my life… “Everything looks fine, all your tests came back normal.” My face dropped and my heart fell into my stomach. I said… “Are you kidding me?” Why do I feel like my body is shutting down, why are my vitals acting like this? This isn’t “normal” for me! He went on to say he could see there was something wrong but he could not figure it out. He turned to me and said he didn’t know much about rheumatic diseases nor autoimmune but his best guess was that my own body was causing me to feel this way. He couldn’t see any other link at this time. He apologized and genuinely felt sorry. He stayed in the room brainstorming with me, offered me all these options, told me I could stay and be admitted but then I could put myself at risk for other issues that live in the hospital. I told him I agreed. The doctor went on and said get into your rheumatologist immediately and take steroids. He wished me well and told me if I needed to come back that was OK. I asked him if there was any way he could do more testing to see if my body was the culprit and he said unfortunately you must follow up with your rheumatologist and they couldn’t do that…

I felt broken, helpless, hopeless and scared. How can I feel so bad and no one in an ER can tell me what’s wrong? Though this wasn’t my first time with this experience, this wasn’t pain, this was my body feeling like it was going to shut down, and no one could help me.

Now the only choice I am left with is going on a search with my rheumatologist. I am not even sure if they can help me. I wonder if this terrible feeling will ever go away. If it doesn’t will I ever get an answer? I just want it to go away and never come back because this feeling is scary and the thought of trying to find another invisible illness is even scarier.

8 thoughts on “When the ER Cannot Help You and Your Autoimmune Disease

  1. I’m so sorry to hear this 😦 Out of curiosity (wanted to compare with my own disorders), what did it feel like, and did the steroids or any meds help? I hope you feel a little better soon. Sending gentle hugs.

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  2. I have been feeling like I am dying for the last month. Legs and arms feel heavy and weak. Can’t walk. Hard to breath. Dizzy, off balance. Hard to talk, concentrate, even swallowing is difficult. No one can give me answers. Can’t take steroids because of heart issues. Feel helpless. Worthless….useless….

    Liked by 1 person

    1. Hello Judy!

      I am so sorry you are going through all that. I hope that you find someone who can help you. That is not right that you are having this and no answers. There are some things I have never received answers for before. But I hope this is not your case. Please do not feel worthless or useless, that is not true at all. You have worth! I will be sending positive vibes your way as I hope things get better for you soon!

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