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Wednesday, October 26, 2011

MS Pit Stop

Hello Everyone. Well, going to pick up my car the other day was the beginning of my disaster. When I logged off of FB, I realized I was not feeling well at all. But I needed my car for samples & it was Friday. So I raced to the dealership traded in the rental for my car & raced back to get my kids at school. The whole time knowing I NEEDED to call my neuro. My arms & legs were going numb, my feet were already numb. I was getting shakier, I felt exhausted and my face "felt weird". I was having trouble swallowing too. Kristina had a bday party that I needed to get a gift for, the car was on fumes, needed gas, and I had to go to the grocery store to get laundry detergent cuz Kristina was out of pants & I'm sure the rest of us needed things too. All this knowing it's 3pm and the neuro will leave at 5pm for the weekend. I call & leave the message for the nurse that I am on Bactrim for a UTI and had 2 days IV Solumedrol(steroids) and I feel worse than when I came in for the MS flare. And I wait. I saw a couple of adults while waiting & kept interaction to the minimum. Although I think they could tell I was acting weird. I called back neuro at 4:45pm & bypassed the regular voicemail & talked to a secretary. She eventually got me to the nurse from infusions, Tish, and she asked a few questions, put me on hold & said to go to the ER. Not surprised, but feel guilty at all the people about to be affected by this decision. My sister, Rachelle Caramagno Riesenberger (Shelly), rallys the troops (finds someone to take me to the ER (I wanted to drive myself. I did just drive for the car trade-off. Probably a bad idea in hindsight). My sister, Patricia Caramagno Polk, was on her way with her toddler & my mom, Linda Mannino, was going to meet me there. This changed & mom came to get me instead. Shelly goes & buys birthday gift for Kristina's party & picks her up & drops her off. She meets Patti at dinner with my son, Paul, and takes him to Toys R Us to entertain him til birthday party is over. Brings my kids home & puts them to bed. She waits until my husband, David Malkowski, can come home after 11pm. All the while keeping people posted & wondering if she needs to cancel her photo shoot the next day. (She didn't have to , I think). My mom picked me up at 6pm and we got to the ER by 6:20pm. Promptly thru triage and told they were going to "open a bed" for me rather than keeping me in the triage area for cots. So they put me in the hall where we wait for an hour. Patient after patient leaving and me sinking deeper in the wheelchair they provided. My mom freaking out cuz I look like I will pass out any moment and bordering on going "Terms of Endearment" on the staff. She questions several times the wait. Finally another check-in nurse notices us and points out we have been here too long and he finds out what is going on. We are in the bed by 8pm. A wonderful nurse is assigned to me . She has a pretty name, Ayumi. It means "going my way" in Japanese. I ask questions, are you surprised? She speculates allergic reaction to Bactrim (for UTI) or worsening MS flare, but says she is only guessing. When dr comes she suspects he will order urine & blood work. She checks on me to make me comfortable. Finally we see the dr at 10 pm. At this point My arms & legs are even more numb, like pins & needles. I feel pressure, but sensation is low. My face feels "weird" and numb and upon further examination has become so red I could compete against "Snow Whites Apple" for richness in color. He orders the urine/blood work. He believes I am having a reaction to the Bactrim & wants to talk to neuro on call from my practice to decide how to proceed beyond that. First they do a double bag/tandem of saline to help flush out meds (two separate times) and add Benedryl, "just in case" it is a reaction. After talking to the neuro, they are told to admit me and do another dose of IV Solumedrol (steroids) and neuro will come in the morning to decide what to do next. In the middle of all this, Dave has left work to come sit with me and sent my mom home. When they decide to admit me I send Dave home to the kids & to send Shelly home too. I get into a room at midnight. Eat some crappy, baby style applesauce, but I know my meds are coming & I haven't eaten. My roommate is loud. Not loud like I can hear her, but she never stops talking or moaning or being demanding. I ask the tech who brought me down to take me back to the ER cuz it'll be quieter. He laughs. I tell him he knows I'm right. He says "You are 100% right." He brings me in the room anyway. She can't get the volume on her tv to work so tells me she'll put hers on the same channel & to turn up my volume so she can hear it too. I tell her I am going to sleep. Sorry. In the morning, she also tells me to call back foodservice to get her more butter. I tell her they need to verify her identity so she can call them. I had to go against all that I am with this woman. I am a natural helper & I ignored her alot. I pretended to be asleep, deaf, rude, I don't know. They told her she would be getting a Valium for her MRI and it would make her drowsy, as well as another med would that she already took. She said she was fine with both. I silently cheered on that decision. She slept for 4 hrs. She snored, but ironically that was quieter and more comforting. I told everyone to stay home. I didn't need visitors. I needed rest and to wait for neuro. When neuro came he ordered a 4th dose of IV Solumedrol(steroids). He said he would keep me another night, but was more concerned that I would be exposed to more infections by staying there. (Steroids lower your immune system). He would rather monitor me for an hour after and send me home to rest til they could see me Monday. They discharge me at 6:30pm. As of now, I am tired and resting. My face has a slight flush, but better. This was my first official hospital stay for MS. I have been in the hospital for hours, but never admitted. Woo Hoo. What a milestone. I could stand less drama. Be well, my friends.


  1. I don't know why I haven't been reading these posts. I love your story. Sorry about the day in ER.

  2. I was diagnosed with MS almost 20 yers ago. Anyone that meets me says that they can't tell I have MS and that I look great. I accredit that to your same attitude of positive thinking. My line is..."if my husband and kids can't put me six feet under, nothing will". Keep up the blogging, it is great reading and very therapeutic.
    Jill - Lake Orion, Michigan

  3. Need help or your suggestions to help the numbness. It has now spread to my mouth throat down my chest. I have no idea if there is something I can do without going to my neurologist and he give me another prescription. Claudia IL


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