So last I posted that I would be starting IV steroids. That took some detours. When I arrived that Monday I was told I had a bladder infection (UTI) and would need to be on antibiotics for a week before I could start steroids. I looked at her and said, "So you are going to make me suffer for another week?" She told me because the steroids will lower my immune system that having an infection already in my body could cause it to spread to other organs and put me into the hospital. So we waited. I didn't even have an symptoms to let me know I had a UTI. I asked if that was normal. She said some people don't get any symptoms which can be dangerous because they can end up septic. Wonderful. I used to get symptoms. Hopefully this isn't a pattern. What I did find out was other people with MS find that a UTI is their first symptom towards having an MS flare up. That was news to me. Although this hasn't happened to me before, but clearly I need to be aware.
So after a week I started IV Steroids for a 3 day prescription. I had to skip a day to get my 3rd dose due to the "Blizzard" snow storm of Groundhog Day. Everything went "normal" for the infusions. Then the withdrawal from the steroids began. When this happens you have never felt so mean. You know it's not rational, but anyone around you annoys you so much. You imagine doing bad things to them or plot in your mind how you will seek revenge. I know this is a bad side effect from the steroid withdrawal, so I try to avoid speaking. I stay inside myself. There are certain people I will not speak to during steroids and a flare up. Those people in your life who have the possibility of either starting a fight or just can be so annoying on a good day. Those people I screen their calls, skip their emails and just avoid seeing them altogether. No good can come of it. It doesn't even stop at anger or rage as many refer to it. There is also lack of compassion. I mean you hear someone's problems and think they are whiny or bring it on themselves or just pathetic. It is so unnerving how disconnected I can feel because it is nothing like my true self. It is truly not me as the steroids leave my system.
So the withdrawal passes. Now at first I should feel tired and foggy. The actual "feeling better" part of getting the steroids can be a week or two after the infusions begin. I typically get some little moments of "better", but there is a process your body does go through. It's a long process, but in the end all worth it. That didn't happen this time.
On Super Bowl Sunday, I started the day feeling...improved. Not better, but a slight feeling of improving. So I felt a little energy and a little less pain. I was actually optimistic. I visited with my mom between my newspaper route and throwing "sample newspapers". When I left I noticed my tremors were increasing. I felt that not only were my hands shaking, but my whole upper torso was vibrating. It isn't unusual for my symptoms to be stronger on a Sunday because it is a long day of work for me. I usually come home and take a long nap and it subsides a bit. This was not going to be your typical Sunday. As I threw the sample papers, I began shaking more and my feet and calves started to go numb. More numb than I had ever experienced. My hands were numb as well. I felt as if the steering wheel was 3 times it's size in my hand. My sensation of touch iis that off. I got severe brain fog and disorientation too. I found myself wandering around Walgreens and not knowing why I was there instead of at home. I kept thinking, "You should be home. What are you doing? Why are you even here?" I ended up in their toy aisle and picked something out for my kids and then some candy for them. I paid & got back in my car & drove the block I needed to get home.
When I walked in, I was shaking so much and still felt disoriented. I gave the kids their surprises and my husband came downstairs. I handed him everything I had in my hands & tried to take off my coat. I knew from his face I didn't look good. I knew how I felt, so I can only imagine. He said, "Good day, huh?" I said, "No, not at all. I just feel worse than I have." He watched me wander around then said, "Should I be taking you to the hospital?" I said, "No. It's not like I'm dying. I just am having bad symptoms right now." He made me lunch and then sent me to take my nap. As I crawled into bed, I glanced at the Michael J. Fox book, "Always Looking Up!" on my nightstand. I feel him & I approach our diseases the same way; with optimism and realism. I spoke out loud to his picture on my book. "Somewhere you may be shaking as bad as I am and someone is wondering why we are still so damn happy."
When I woke up, the tremors were slightly better. The brain fog was gone, but the numbness from my feet to my calves was there. It feels like my body is floating above my legs. I thought, I finally understand how my friend, Kelly, can prop herself up on her legs and even take a few steps when she cannot feel her legs. She is wheelchair bound most of the time, but her hips work. She and her brain still can "know" how to walk, her feet just can't feel where she steps. This is how I felt. I could see I was walking and moving forward, but I couldn't feel the ground. It is a bizarre thought and sight.
The next morning. I did my newspaper route as usual. I couldn't feel my feet still, but tremors and numbness were less severe. It seems the morning brings improvement to my symptoms, but as my day goes on they progress. This is why I don't need my cane when I deliver papers, but will need it as the day goes on. As I delivered, I started feeling "wobbily". I felt like my legs would buckle or I may collapse. I kept going slowly until I finished. When I came home Dave wanted me to call my neuro. I said "I don't know if this is gonna last." A new symptom needs to present itself for 24-48 hours without going away. I reminded him Mondays aren't always my best day. If it continued I would call in the morning. That was the plan anyway.
Dave left for work and then I asked my son (4 yrs old) to help me get dinner in the crockpot. I wanted to make sure we ate and a friend of mine and given me a recipie for crockpot lasagna. The only real work I had to do was brown ground sausage in a skillet before starting the layers. I really couldn't ask my son to do this so I propped myself up against the stove and browned the sausage. He helped me get the crockpot on the table and we began the layers. We were almost done when I felt myself starting to go down. I felt like I was going to collapse to the floor and maybe black out. It happened so fast, but I grabbed the chair next to me and flung myself into the seat. I immediately put my head down. "What's wrong, Mommy?" "Um, I'm ok. I don't feel so good." He looked at me with concern. "That wasn't too good was it, Honey?" "No." We finished the layers and I plugged in the crockpot and called my neuro.
I left a message around 3pm describing my symptoms and that I had finished the IV steroids last week. I didn't know if this was considered normal, but these were not the symptoms that lead me to the steroids and in fact these were brand new symptoms for me. I had had numbness, but not to this degree. Kelly calls it "creeping numbness". It feels like it is slowly creeping up your limbs. That is how it felt because even though it had stayed in the feet and calves consistently, it kept drifting or creeping to my thighs. I also have had tremors in my hands before, but the vibrating torso was new. I have to ask about my fingernails too. I don't know if it's relevant, but my fingernails have been like paper the last 2 weeks. They keep tearing. and nicking. I cut them short and tried putting clear nail polish on so they could grow and be protected. The nail polish didn't help and came off the next day and still my nails keep ripping. So we will see if that is relevant. Maybe a side effect from the steroids?
I didn't get a callback from the neuro on Monday or Tuesday morning. I left another message at noon on Tuesday. I finally got a call back around 3pm. Dr Beall wants to see me the next day. She tells me he will be at the "Utica" Office. I said, "Why is it always have to be there?" (This particular office is a half of an hour drive each way. Not only are they slow to get me in & out so I can be home on time, but the drive is long for me.) She said "That's where he will be." I said, "I cannot feel my feet or my calves. I just don't feel comfortable driving that far like this." (Shouldn't this be commonsense?) She said, "Well I can see if I can fit you in with another neuro at our Clinton Township office." (This office is a half of a mile from my house.) "That's fine." So she sets me up to see Dr Giancarlo for Wednesday at 3:15pm. He is the head of the practice, so fine with me. "I will have to bring my kids if I come at that time." She said, "That should be fine." I will take bringing two bored kids over driving too far. I haven't had any trouble driving, but why risk it with these kinds of symptoms?
So today I will see the neuro and see what he thinks. Maybe 2 more days of steroids? Maybe new meds? I have had some questions about my meds. I even went to have a discussion with my pharmacist to question dosage and interactions. I had heard two of my meds weren't supposed to be prescribed together. That was confusing to me as they were prescribed for me TOGETHER to work TOGETHER on the same symptom, nerve pain. The pharmacist explained that the doses were low enough and that the "specialists" do different things with drugs to get different benefits. She told me I am being monitored and I had no need for concern. I had asked her about my new pain meds too. I felt I was taking them as directed, but wanted to know when to stop? How do I know if the pain is gone if I am taking the pain meds around the clock. I would think it had subsided and I would skip a dose. By the time the next dose after that would come around, the pain would come back hard. She asked me if I was in pain then. I answered "Yes" She said I should be taking them. I told her I had I could still feel the pain. I wondered if the nerve pain med needed to be increased. She agreed that may be a possibility, so I will ask at the appt about that too. She also told me to stop skipping pain meds. She said, "Take the pain meds when you should. Keep doing that until you feel your flare is gone and then you can start to stop. I appreciate that you don't want to feel dependent on them, but don't be a martyr. Right now you need them so it isn't a dependency. It's a need." So I have been listening to her. Talking at that little window at the pharmacy can be beneficial. I brought a list of all my meds and doses and when I take them. It was very interesting to have her explain what I should consider changing and how it helped my body. I definitely feel more informed and confident over why I take what I was prescribed instead of blindly following my neuros advice. I trust him, but sometimes I can feel like I just don't know any better so I should do as they say. It is nice to have someone explain why and then understand that I am right to trust him and to trust myself. I can ask better questions now too.
So today I will talk to the neuro and let him know that "I've got some nerve" acting up and bringing me to new places of MS. The ride with MS is never boring, but I am still going to keep smiling all the way. It is just who I am. Michael J. Fox and I smiling as if we have some secret that we may share with you or we may not. The secret is no matter how out of control my body is, I still have control of my mind, my attitude and my spirit. So Yippee Kye Aye, we are at the rodeo and kicking up our heels in this life because we can!