Here is some UGLY:
I woke up in the middle of the night on Tue/Wed sick with stomach issues. I'm still not sure if it was some kind of bug or if it was just part of this whole immune system attacking itself thing. I spent all day Wednesday in misery. It was just one of those "no matter what you do you can't get comfortable" type sicknesses. By Wednesday evening I couldn't move my legs again, my toes felt like they were going to fall off, and I was extremely weak.
Thursday morning rolled around and I felt fine stomach wise, but I was in a lot of pain. I was back to how I felt over a week ago as far as strength and numbness. To say I was frustrated is an understatement. I got a surprise visit from my mom late morning. FYI, if you surprise visit me, expect to stand at the door for a minimum of 5 minutes...it takes me awhile to get to the door! ;) Within 10 minutes of being here she told me she was taking me to the ER. I had debated calling my husband earlier in the morning to suggest the same thing. I knew I needed to do something. My neurologist was on vacation and I had tried calling his office numerous times with no answers. I was told he would be back Friday but probably couldn't see me until Monday. I knew I couldn't wait that long.
Luckily, the ER got me right in, I never sat in a waiting room. The ER doctor was able to get ahold of my neurologist and he gave instructions on what to do. It was good to at least have him on the phone so I knew I was still dealing with the doctor who knew my condition in the hospital. It was also encouraging that he insisted I call with any changes. He said this was complex and he wanted to know all the details and what I'm experiencing so he knows how to treat me. Hopefully, we will be done with the unhelpful phone calls to receptionists and nurses who have no idea who I am or what I have.
I was given steroids through IV and pain medication. The nurse said as soon as the steroids were done we could go home. My neurologist ordered two more days of Immunoglobin therapy, that is the same treatment I received in hospital. About half way through the steroids my vitals were getting worse. My heart rate and blood pressure just kept rising. I was given more pain meds and finally some blood pressure meds in my IV. That brought it down low enough to come home.
It was a long day. Thank you to my mom and sister for sitting with me all day! I was cranky and irritable so I know it wasn't fun for anyone. My husband "gently reminded" me after I got home that my "cranky level" had been pretty high the past few days. I had a lot of excuses in my back pocket, but realized he was right. I know the people that love me understand why I have been reacting this way the past few days, but it doesn't make it ok. I had to do an attitude check. I promised to stay positive through all this, and I haven't been the past few days. Everyone, including me, is happier when I have a positive attitude! :)
Day 8 is here! I am writing this at 7:30 am and haven't been to sleep yet. I think I can blame the steroids. I am supposed to go in for my first immunoglobin therapy today and they take 4-5 hours, so maybe I will catch a good nap!
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