pounds & persistence

my journey toward fitness and wellness and faith

It’s Time

Weight: Who cares?

It’s time for me to break my silence. It’s time for me to ‘fess up to where I’ve been, what I’ve been up to, what’s been going on. It’s not that I’ve been purposely absent, at least not initially. It’s just that I was overwhelmed and then overwrought and then just over it all. Let me clarify…

Initially, I was just busy. I was going to my Weight Watcher meetings, which I had so carefully chronicled for your reading pleasure here, and making it to the gym, albeit still only occasionally, and working my behind off in the classroom, so I was busy. Things were good. And then, just a short time after my last post, two months or so, things changed.

I was teaching class one nondescript Wednesday morning when I had a strange burning sensation in the right side of my face. My students assured me that, no, my face wasn’t swelling or bright red or in any way abnormal looking, and I carried on with class. But then I noticed that my handwriting was a bit off. Not in a distinctly discernible way, but in a subtle way that one would only notice when one signed one’s name hundreds of times a day on bathroom passes and sick notes and grade sheet home to parents. My typical signature was just a bit sloppy. And then there was the general flu-like feeling that began complete with neusea. And the foggy brain feeling. And the extreme fatigue. And then the tingling. Over my entire left side of my body, a strange pins-and-needles, foot-fell-asleep-because-I’ve-sat-crosslegged-too-long-and-now-it’s-waking-back-up feeling. Odd.

After first period, I went to see the school nurse. We concluded that I must have eaten something slightly different from the usual and that I must be having an allergic reaction. She instructed me to go get Benadryl, which I did and which I took before third period. By fourth period, my unusual symptoms combined with the Benadryl to produce a practically drunk teacher who sluggishly navigated through her class. The class was worried, and so was I. But by Friday, all my symptoms had disappeared save one- the numbness. I assumed I was over my initial allergic reaction but wondered why I might still have this weird lingering issue. I went to see the nurse.

I explained that I was feeling much better, but that I still had this lingering pins-and-needles sensation from the top of my head to the tip of my toes. I could function perfectly fine, I could still drive my car, which has a manual transmission, without problem, but shaving my legs was the most bizarre experience since half of my body felt like it was numb. I wondered if there was anything she could give me so I could regain feeling and teach third period? She sent me to the Urgent Care facility immediately instead.

I insisted my husband not leave work and join me, which he wanted to do and which I was sure was ridiculous, and instead waited as they ran test after test only to send me home 2.5 hours later with no idea what was wrong with me and a prescription for steroids, which I never had filled. I saw my primary care physician on Monday, who again had more questions than answers and again ordered more tests. I had a LOT of blood drawn and eventually, an MRI. Then, just before Thanksgiving, my doctor called to tell me that she was sending me to a neurologist- I had lesions in my brain which were indicative of Multiple Sclerosis. I cried for hours that day.

Over the next few months, I met the neurologist, I succumbed to a spinal tap and I discussed my prognosis when, not if, my diagnosis was confirmed as MS. I tried to stay upbeat. I tried to make jokes. My sister told me that I had a dark sense of humor and it really wasn’t funny to anyone around me when I made remarks about wheelchairs and handicap parking spots. The neurologist said that a positive outlook was essential to success with MS, so my husband was consistently Captain Positive and could not abide depressed or depressing remarks I made. I tried not to cry when other people were around. I tried not to ask the question that my neurologist said so many MS patients ask “Why did this happen? How could this happen?” My neurologist was clear that this was a waste of time and only lead to self-pity, which made MS worse I guess. But in my mind, how much worse could it get than being diagnosed with a degenerative disease for which there is no cure which, more than likely, at some point would claim my mobility or my intelligence or my independence or all of the above.

In January we got the spinal tap results back. I have MS. I started to cry a little. My husband felt relived. He was afraid that it would be a brain tumor or, worse, something they could not diagnose and more tests would have to be run and more doctors would have to be seen. He eagerly asked about which drug regimen I would begin injecting, as he had done hours of research on these already, pretty much from the moment we were told it was likely MS. We listened studiously as the nurse explained that my insurance would only cover the daily injectable drug and that I would have to shoot myself every day with a needle in the hopes that the drug would allow me to live a pretty normal life and that I would not be disabled too much in the long run.

The nurse came to our house the day before Valentine’s Day. She would train me to inject myself. She was warm and upbeat and positive- my neurologist would have loved her. She made the process of sticking a needle as smooth and fun as possible, but my hands still shook as I practiced again and again and again. I made my husband practice too, even though his hands didn’t shake and he had absorbed everything she said perfectly, executed her instructions precisely. She repeated again that life would be ok, that I should be upbeat, that our lives would be perfectly normal. Other than the disease that has no cure. Other than the daily shots. Other than…

The response from people varied. Of the few I told, most didn’t know what to say. I most appreciated those who admitted that they didn’t and the one or two who just cried with me. Some told me to stay strong and talked about how positive and determined and strong-willed I was and how they were sure I’d beat it. Others seems depressed and very worried and talked about preventative measures like driving an automatic transmission instead of my manual one and moving to a house without steps instead of the three-level rowhouse we own. Everyone, it seemed, knew someone who had MS and either wanted me to get in touch with them for advice or wanted me to take hope from their story. One well-meaning person told my husband that they had read about how hard MS was on a relationship- I suppose the intended effect was to prepare him and sympathize with him but it just made me feel guilty and miserable, like I was bringing the black plague on our relationship.

I was overwhelmed with emotion and felt a lack of outlet to express them. I tried very hard not to cry and certainly not to show it to anyone else. I got most of my crying done between 3:30 and dinner time, since I knew my husband wouldn’t see. I tried to be proactive. The neurologist had said that exercise can have a dramatic impact on wellness with MS, so I went for long walks or jogs and I’ve taken up Yoga, which I discovered I love. I gave up red meat. I started taking multi-vitamins with my shots.

One afternoon, I was talking with a friend who recently revealed to me that she too had been diagnosed with an auto-immune disease for which there is no cure. Only her disease is terminal and will, eventually, kill her, even though she’s outlived all the prognosis’s initially given to her. And I knew, when talking to her, that in the world of auto-immune diseases, I’m lucky. Even in the world of Multiple Sclerosis, I’m lucky. I have relapsing-remitting and I’ve only had 2 attacks. I only have 2 brain lesions. Because of my clear symptoms, they caught this early. I have medicine which I can take every day and will help manage the disease so it doesn’t get worse. I have information about diet and exercise at my disposal so I can feel better and keep my symptoms at bay. This disease will only shorten my life span by a slim margin, if at all, and most of it can be pretty darn normal. But even though I knew, I still know, that I am lucky, I started to cry. Because it seemed so unfair. Because I planned out a different life. Because, until 6 months ago, my biggest struggle was if my husband and I would be able to agree on having a child. Because having a child now seemed like a ridiculous, far fetched idea. Because so many of the dreams I planned out for myself could now become a ridiculous, far fetched idea. And I know we aren’t promised an easy life. I know we aren’t promised anything. But we kinda do think we’re promised things and we’re pretty damn pissed sometimes when it doesn’t turn out like we thought.

I live just outside Baltimore and whenever I’m in the city, I’m always struck by how one moment you can be driving through a block of million dollar rowhomes, impressed by the neighborhood, and the next you can pass a block of abandoned drug houses, trying not to make eye contact with the junkies. I told this friend that, for me, dealing with my diagnosis has been like driving through Baltimore- block by block. One day, I’m ok. It’s not that big of a deal. I’m even a little peeved if people bring it up because I don’t really want to deal with it, dwell on it, have it define me. The next day, I’m thoroughly depressed because of it and all I can think about is my diagnosis and all the what-if’s that might keep me from what I perceive as a good life. Block by block. One day, I’m full of faith and positive outlook. I truly believe God is working for my good and therefore, even if I can’t have a child or maybe even walk, I’ll still have a rewarding life of service in any number of other ways I imagine. The next day, I’m crushed because one day, I might not even be able to WALK let alone have a child and I feel like God’s definition of my good really sucks and it’s all I can do to drag myself to a yoga class let alone serve the world in some profound way. Block by block.

This is one of those times in my life when I have to remind myself regularly that my emotions are just that-emotions- and not necessarily reality. This is one of those times in my life when it benefits me to remind myself of all I’m grateful for. This is one of those times in my life where, emotionally, I have to crawl before I’ll walk or even run and sometimes that crawling is painful. This is just one of those big deal times. But I’m pushing on. This morning, I research nutritionists. Later, I’m going to a yoga class. I weighed myself this morning and my weight has not changed dramatically since September, which is somewhat miraculous since it’s been the very last thing on my long list of things to care about lately. Last week, I was at the beach on spring break getting golden and relaxing and next week kicks off the last 9 weeks of the school year. I’m participating in a 30 mile Bike MS ride in June with my parents and sister. The hubby and I are trying to decide where to celebrate our 5 year anniversary this fall and the last 6 months have brought us closer, not further apart. Life is slowly returning to a new kind of normal. It’s not easy, and it’s not pain free, but I do have confidence that in the end it will be good.

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4 thoughts on “It’s Time

  1. Kathie on said:

    Gosh….you are such a genuine human being, I love you so much.
    Kathie

  2. Momma on said:

    other than the FACT that you have an amazing writing gift (ahhhh to be that author one day–yes?) the content is good to hear. yes, I’ve heard some along the way but it’s good to be able to understand your thoughts and your heart. know that we stand with you all the way darlin’!

    • Kathie on said:

      You know, Laurin, that Polio is a nueroligical disease caused by a virus. I had it at 22 months. You now have a nuerological disease which we believe is an auto immune process in your early adult life. Neither of us had anything to do with the incident, we didnt’cause our illnesses. I don’t think that I can adequately express the empathy I have for you and your journey at this time.

      No one is keeping score but in many ways I had it easier because I did not lose something that I remember having. My life, what I am physically able to do or not, is my reality. I have definately made progress as a result of surgery and therapy and determination and I have come from crutches, braces and wheel chairs. I am a product of the Sister Kinney Institute, “Use it or lose it”. Now I walk independently.

      But then came Post Polio Syndrome. A diagnosis that loomes over the heads of us all who felt we had beaten the disease. We thought we had limitations but didn’t believe it could actually get worse. I don’t have it, but the medical advice is to be more “zen-like”, exercise but conserve. This is such a mixed message for those of us who were raised on the “use it or lose it” mantra and for those who have weight issues as we do.

      It turns out that we can actually “use up” or “burn out” the compensatory neurological pathways that the body lays down from over exertion. One doctor told me that the way that we could understand it was to think about how the neurological system ages. Everyone gets old. The human body wears out. We who have neurological disease put greater stress on the existing pathways that are compensating for those that are damaged or lost and need to conserve and not over exert.

      This puts a whole new light on fitness, diet, maintenance, and living life to the fullest. I guess the best way to say it is that the scales of balance have changed. The balance between satisfaction and need has become more subtle. It is important to tune into this and re-examine old paradigms. It now becomes more important to get this right.

      I love you and if you ever want to talk I would welcome a dialogue.

      Kathie

      • I just read a fabulous article in this month’s edition of Real Simple magazine about a woman who survived Polio only to develop PPS down the road. She is passionate about, and doing a great deal for, Polio vaccination in other, largely 3rd world, countries. You should read it- I found it inspiring and you may as well. I love you, Aunt Kathie! Thanks for the support!

        Laurin

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