NOT MY IDEA OF A GOOD TIME IN CHICAGO

 NOT MY IDEA OF A GOOD TIME IN CHICAGO

I was grateful I had a room to myself. It was quite nice. A great view out the window. The food was not bad. Huge bathroom with a shower. I think it was Saturday that the neurologist came in and after putting me through the paces, declared she felt more strength when I pushed against her hands. She was very excited; therefore, I was too. I managed an actual shower and managed barely to wash my hair. This was something new! I looked bedraggled but I didn’t feel disgusting anymore. It was a long day, and I was anxious for Sunday to come so I could go home. 

I had started my period due to lack of my birth control pills and was given what felt like a twin mattress to put in my underwear. Apparently, they have not heard of maxi thins. I had a physical therapist come in and we walked the hall a bit with a belt tied to me in case I fell, which I did not. I was given something to help me poop. If they could fix THAT problem, I would consider them miracle workers. Never been regular a day in my entire life. I had annoying nausea going on, which I think was a side effect of the spinal tap. Headache too. That more than likely from the infusion liquid. Which they referred to as liquid gold. The bottles they were giving me each day were upwards of $17,000. And I was getting 3 days of it. Liquid gold indeed. The bill I would be getting from Rush was starting to concern me. What would my insurance cover? Not really things I wanted to be worrying about while I was trying to recover. I put it to the back of my mind and decided it would be what it would be, and we’d cross that bridge when we came to it. 

Sunday arrived and it was up in the air if I could go home. Another day of IVig might be beneficial. I hoped my strength was returning enough for me to leave. Family got there around 11am and it was decided shortly after I could go home! I was still dealing with horrible nausea. I never had morning sickness with my daughter, so this was something I had never experienced before. I can’t remember what time we left the hospital, but we had several hours to kill before the train left at 6 back to Macomb. We Uber-ed to Navy Pier and found a place for lunch. I was not hungry at all. At one point I made my way to the bathroom because I really thought I was gonna vomit. I was miserable. My husband wanted to go back to Rush to see what they could do but I refused. I called my doctor back in Macomb and was told I might need a blood patch to help my symptoms but for the time being, something called Nauzene at a drugstore might help. Luckily there is a Walgreens on every corner, and we managed the walk to one to purchase some. Can I just put this out there to the makers of Nauzene? Something you are taking to help you with feeling pukey should not taste disgusting. Chalky cherry was what I had to deal with. I barely got them down. They worked marginally but at least I managed to get down some cheese pizza. I had no food at all before then. We sat on benches and watched pigeons and people. I felt somewhat better lying down, so I imagine I looked like a homeless person trying to catch a nap. My arms looked like a druggies from so many IV pokes and placements. FINALLY, it came time to go to the train station and home. It was not a pleasant train ride. I was able to sprawl across 2 seats and spent most of the three-and-a-half-hour ride bent awkwardly at the waist attempting to lie still. Longest train ride of my life. 

We got home close to 10pm and our wonderful neighbors greeted us with a full-blown meal. My husband and daughter were delighted and dug right in. I was so grateful for the caring and support, even if I was not up for eating anything yet. 

I was SO happy to be home. But my journey with this horrible auto immune disease was far from over.