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Friday, February 25, 2011

How MS Feels (A Poem)

How MS Feels (A Poem)

My hands shake as my words slur,
But it’s not what you think.
I trip and I sway,
Though I haven’t had a drink.

I could fall at any moment.
And this never leaves my mind
But I’m trying hard to manage
As I’m on this MS ride.

My legs look normal
But feel like rubber.
My arms look strong enough,
But melt like butter.

I have slept for hours,
But my eyes still droop.
I want to walk straight,
But my head loop-de-loops.

You think I’m paying attention,
But my mind has wandered away.
I want to speak clearly,
But I’m stuttering today.

I try to read your email,
But I am seeing double.
I want to come with you,
But walking gives me trouble.

I may need your patience
And your compassion too.
But never your pity
For all I have to do.

I need you to be kind.
And try to understand.
I’m living a new life
Doing the best that I can.

I am making an effort
To be someone who
Is making a difference
In my own life too.

Give me a chance
Be on my side
I am still me
Even with all the drama inside.

My body has changed
But my heart is the same.
I still have a beautiful life
Even when playing the MS game.

The thing I need the most
As you try to understand
Is the comfort and confidence
That I still have my friend.

by Tammy Malkowski (2/25/2011)

Frozen in Mind

Well, I feel as though I am frozen in mind as I wait for the tests to come back. Now that they are completed, I have to be patient. My appointment isn't until March 14th and unless they see a real need (read emergency) to call me in earlier, then I have to wait for that appointment. It would be easier if I felt ANY better, but I don't.

This is the longest and most consistent flare I have ever had. Well, at least that my brain fogged mind can remember. Usually I may have a flare stick around for a few weeks, but during it many sympathies come and go. A few may stay, but MS is constantly changing with me.

Last Summer, because the heat was high all season long, I had a 3 month long flare. During the Summer, I did have days where I felt better than others. This Winter flare is different. The creeping numbness from my toes to my mid-thigh is holding on. The tremors have subsided and only come out at certain times of the day, like when I am overtired or I am overdoing things. This numbness hangs on. That is a little scary to me.

Is it going to stay on as a permanent symptom? Is it going to get worse and lead to more walking aides like a walker or a wheelchair? Will it improve once they figure out what's wrong and have a solution to fix it? Can they even fix it? So many questions.

I should explain for those of you who don't have MS that during a flare up or an exacerbation of MS there are lesions in an MS brain that have become "active" or are in an inflammation period. When they prescribe IV steroids the idea is to "calm" or lessen the inflammation of the lesions. Once a flare-up or exacerbation has passed the lesions will either remain in a calmer state or disappear entirely. The ones that go away usually take a symptom with them. The ones that remain can either hold a symptom that will come or go or it will hold a symptom that will mean permanent damage. For example: My tremors seem to come & go. That has remained since I began having symptoms. Stuttering & slurring have come & gone for me, but less often which indicates, to me, that those lesions heal and may comeback later. Some MS patients may find themselves in a wheelchair after a flare-up or exacerbation. I know some people who were wheelchair bound for 6 months and then eventually regain full use of their legs like nothing ever happened. The ones who remain permanently wheelchair bound would indicate a lesion that has remained and has so much Myelin damage that it won't repair itself. Neuros & researchers don't know why some lesions heal & some others do not. Hopefully, some day they will. (Note: Myelin is the protective covering around your nerves.. When it becomes damaged the signals from your nerves to your brain get all mixed up or don't send the right message or any message at all)

So here I wait for results. Still having trouble walking and really tired. I did got to be fitted for the AFO or leg brace for my right foot. I had to reschedule because apparently I haven't met my $500 deductible for the year yet and they need that just to start. I asked how much the device is and was told $750. After I meet my deductible I have to pay 20% of the $750. $150 is more manageable than $750 so we are waiting. Frankly, I usually meet my deductible in February or March, so I am not worried. After all these tests get submitted to the insurance company, I am sure the deductible will be met and I can move up my appointment. I have waited this long, right?

Speaking of waiting...I also have to wait for the Pain Management Specialist as well. He is apparently booked until mid-April. Both of them were. So I will see him on April 19, 2011. Again, waited this long... I really am interested to see what he has to say. I have been on Darvocet for many years for Fibromyalgia. Until a year ago, I rarely took them unless I was in a lot of pain for a flare in the Fibromyalgia. My prescription typically expired before I had even gotten half way through the 1st bottle. Last year when my MS really flared up with unbearable pain that changed. I began taking them more often. As always they only took the edge off, but never really took the pain away. Since the FDA recalled Darvocet, I had to try something else. Now I am on Tramadol. It does the same as the Darvocet, takes off the edge, but not all the pain is gone. Maybe this Pain Management guy will be able to find a better solution for me. It's his job, right? Who knows what will happen? I am dealing with nerve pain, muscle pain, and now headaches as they are becoming more common too.

I will keep you posted on what I find out. Meanwhile as I remain frozen in my mind & wait for some kind of change I will move forward & smile as I count my blessings in my beautiful life. Remembering my blessings always helps to put things into perspective. Love to you all! Be well and count your own blessings!

Wednesday, February 9, 2011

Short in My Brainwaves

Update from Neuro: I saw the neurologist today, but not the head of the practice. The woman I saw I guess works in conjunction with him. I don't really care because I really liked her. The one thing I notice in this practice is when you see the women neurologists things actually happen. The last woman neuro I saw I got new meds to help me and started physical therapy. This neuro was nice and listened to me and really looked at me. My MS specialist is good, but sometimes I think he is more interested in proving how good he is then actually paying attention to what is going on with me. To be fair he has never seen me in a flare up because he hasn't been at the office when I have come in for an emergency appointment. So we will give him that credit.

Okay, back to my neuro appointment today. After my examination, this neuro wants to give me an MRI of my brain, a thorasic MRI and a Lumbar MRI. The first two are most important and the last one we can wait on until after she reads the first two. Did you get all that? Ok. Moving on. Next she wants to get a new Evoked Potential Vison Test. I haven't had one of these since I was first seen for problems in 2008. In addition to blood work to check for low Vitamin D levels, she wants to send me to their pain management specialist on staff to see if he can help me in that area. She is concerned that some of my pain may be coming as a result of the tension in my neck & shoulders.

She also agreed with me that the nerve pain meds need to be increased and claimed I was on a "baby" dose compared to what some of her patients are on. So she is upping it a little to see how I do at first and then increasing a little more after that. Still no where near the max, but hoping that will help with the burning pain, but also should help with weakness & numbness. The last thing she would like me to do is be fitted for a leg brace for my right leg. I will pause for a moment as you take that in. I am not exactly thrilled at this scenario. She says that it will help me to not trip or fall because it will keep my foot in a position to not drag or "drop". Yippee. A leg brace. Woo Hoo. Okay, this is not hte worst thing that could happen to me, but it still isn't great. I will deal with it. Maybe it can help? Maybe it can't? But I will try.

So there you have it. You are all updated on my short in my brainwaves. I will report back after all the tests are done. I am supposed to go back and see her on March 14, 2011. Until then be well, be happy and smile like you did something naughty. It will keep the neighbors talking and they deserve to worry, right? I'm not worried so let someone else freak out about their own paranoias. ;)

I've Got Some Nerve

Hello Everyone,
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!