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.

Brain Free

I wanted to update you all on how my physical therapy (PT) went this Summer. I started the end of April finished on July 19th. It was amazing how wonderful I felt when I was done. Yes, I said wonderful. I hadn't felt that good in years. The people at Theramatrix in Eastpointe MI were incredible. My head physical therapist was Rachele, and she did more than just get me "good enough" to send home, she made me better. Every time I improved on an exercise or task she would find a new way to make it more challenging or she would replace it with a new one. I not only improved my balance, but I was getting stronger. I also went to PT because of severe tension headaches. My "Pain Management Specialist" doctor had to give me steroid injections into my neck to loosen all the tension that was there. Then he ordered Myofascial Release which I discuss in my post on April 14, 2011. That really helped. I never knew I could get rid of the tension in my neck. It has always been there, even after a massage. It helped so much. At the end of my PT, Rachele added in exercises that coordinate a Bosu Ball into it. If you aren't familiar, this is an exercise ball seemingly cut in half with a hard surface on the bottom. I can push my foot into/onto it for lunges, I can flip it over and use it as a balance board, I can do all sorts of exercises to improve my balance, strength, and coordination. I also began using MS Yoga in March and that has done so much for me. When I use it, my muscles feel less tight and tension leaves my body. I feel more energized and feel like I can better manage my MS. Both programs, PT/Bosu Ball & My MS Yoga, help me gain a sense of control over my body and feel like I can better manage my symptoms. Possibly even lessen the flare time or number of occurrences. This would all be really helpful to me now if I hadn't let my body down by not making my health a priority. I was so focused on "finishing" our new home to move in, that I kept putting off my own needs. I honestly didn't believe it would take so long to be done. It was like running through quicksand. In August, I could feel some effects of the lack of PT and Yoga. I told hubby that I need to get back on track, but I kept putting it off. September came & symptoms began to get worse. October came and I knew I was in a "mini flare". Now the "Mini flare" is a full blown MS Flare. I have had 2 days of IV Steroids, but now they had to stop due to a bladder infection. So I have to take meds & resume IV Steroids on Monday. I am trying to rest & take care of myself, but it is hard when you have 2 kids & responsibilities at home. I just have to take my own advice & make me & my health a priority. I told Dave that I need to look at my PT & Yoga as a necessity for our family because when I go down the whole family is effected. He agreed. As soon as I get stronger from this flare, yoga & Bosu Ball are back. I will start slow, but I need to add it back in. I am going to include the link for the yoga dvd, in case anyone else would like to try it. It is free! I love that it has all different levels and anyone with MS can get benefits even if you can't stand up. The instructor never lets anyone feel bad for how little you do. He always says, "Do what feels good to you, on THIS day." I love that! Here it is: http://www.msactivesource.com/ms-yoga.xml So, so long for now, but you won't be brain free for long. I will not have a lapse between posts like this last one again.

We Now Return to Your Regularly Scheduled Brain Blog

Hello & I'm Sorry, This will mark the first time I have been away from blogging for so long. This post is meant to clarify & explain my absence. My family was in the process of remodeling & redecorating our new home while trying to sell the old one. Meanwhile, we were trying to accomplish all of this before actually moving in. Needless to say this Summer, I did nothing but work on the new house with the only exception coming when I had to clean the old one for a "Showing" to prospective buyers. From June 10th to August 19th, all I did was deliver my newspapers, come home to eat then head to the new house to clean (it was pretty dirty when we bought it), sand basement stairs, strip paint off the stairs to the 2nd floor, strip paint off Kristina's closet door (it was tiger orange and would not go quietly), paint every room, no, every surface of this new house, lay tile in the basement/laundry area, clean up all the drywall dust, paint the basement stairs, refinish the hardwoods for the 2nd floor stairs, plus run every errand and set up service calls for appliances, furniture, carpeting, drywall guy, electrician ... I am tired just reading it all again. We moved all of our furniture & most of our house on August 20th. Then the new house looked like an episode of "Hoarders". I couldn't unpack because now we had to make the old one clean & move in ready. That took about a week. Meanwhile, we were pushing aside boxes to walk thru the new house & trying to find items we needed that were still packed. We finally sold the old house & closed on it on September 30th. So that stress was lifted, and I could now concentrate on the new house. I finished unpacking on Saturday, October 15th. There are still a few doors that need painting and some of the moldings too. I also need to put a 2nd coat on the basement steps. That is all waiting for now. MS has thrown me into a full blown flare & am on IV steroids now. So MS has forced me to sit down & now I have time to update you all here. So we now return to your regularly scheduled brain blog...