That one perfect partner...

Today is my husband’s birthday. It made me realize that I’ve known him for a decade. Time flies, but it also feels like I’ve always known him. I will be forever grateful that he came into my life when he did. In many ways, he restored my faith in God, but also my faith in the forever kind of love. Because in the most unlikely set of circumstances Tom was exactly what I needed, when I needed him. Like a rock to cling to in fast water, he came into my life at a time when I was unable to trust that my life’s partner wouldn’t leave when things got rough. But I’ll tell you, he’s one hell of a man and he undervalues himself daily.

When we got married, little did we know exactly how many opportunities he would have to show me exactly the kind of man he was. This year we would learn that I have MS, and that Sydney very likely has Autism Spectrum Disorder. To say things have been hard would be an understatement. But when I need to put 100% of what little energy I have towards taking care of Sydney, he doesn’t have to be asked to step up and make sure our family doesn’t fall apart. And on top of that, he made it possible for me to go to New York for a badly needed respite and for me to meet my celebrity crush.

People tell me that they don’t know how I manage to stay strong and(mostly) sane recently. My answer is that I have Tom. And I just want Tom to know how much I appreciate him. So, everyone here’s to Tom. Happy Birthday, honeys!

What now?

So I guess this post is going to be about the election. There’s little else I can think about for more than a few minutes at a time and I’m actually finding relief in the act of dealing with the day to day stress currently in my life.

For the first day I feared for my own life. What’s going to happen if I can no longer have health insurance? Though I’m not sure what the likelihood of that is. If there’s a lifetime coverage cap, I know I’m screwed. I had images in my mind of people who had MS before there was treatment to slow down the progress of the the disease. Will my quality of life decline in that way? That law became a burden for the working poor and the middle class because the health insurance and pharmaceutical lobbies made damn sure of it. Because they fund our lawmakers’ election campaigns, they held their leashes on both sides of the aisle. Though it’s slightly more complex than that, it’s true. I studied the very process of that piece of legislation for a college term. I know what I’m talking about.

The second day I feared for my family and the people I knew. What would happen if it all went to hell? What would happen in the face of a world of violence and conflict, the likes of which people in this country only see in the news. Don’t kid yourself. THAT has already started.

The man who won the election campaigned on a platform of blame transference. One would argue that the other lost the election by campaigning with her own level of blame transference. Would she really have helped us that much with more of the same? She might have bought us a little more time to wake up to reality a bit. I felt that she was our best chance for that given the choices laid out in front of us. And she at the very least wasn’t interested in kicking the hornet’s nest of bigots that were just waiting for permission to come out of hiding.

But that angry mob was always there and it was growing exponentially by the day. They’re packing firepower. And if you haven’t noticed, they were beginning to surface. Life sucks for a lot of people. People are broke and tired of working so hard just to be broke. So people are ready to believe that it’s not about the grotesque amount of wealth held by the so-called “job creators.” You know they make money with their money, right? And it works better for them than sharing it with us little people by creating jobs. The stock market pays out when profits are high, benefiting from the underemployment of the masses. Unemployment numbers are down, but did you know that they stop counting people who have given up looking for jobs?

They’ll tell you it’s not that they don’t want to loosen their tight fists on more money than they could ever need in 100 lifetimes in order to give a decent day’s pay for a day’s work. And how dare we ask to be able to afford to eat and go to the doctor too on 40-80 hours a week wages. We’re so conditioned to believe that somehow not having enough money to go around between us is our fault so we fight amongst ourselves. It’s a remarkable way to make certain that we’re too busy to look up.

And when we do look up for answers. Those same people who profit off of our poverty, use our poverty of soul to lead the desperate and the tired to believe that the REAL problem in this country is the LGTBQ community, or immigrants, or people who don’t have white skin, and those who don’t share our religious beliefs. Let’s not focus on the 1 in 5 women who fall victim to sexual assault. Instead, let’s turn our focus on micromanaging women’s healthcare, making it ALL about abortion. Or even better, lets get upset over the possibility that a transgender person would need to use the restroom. Ignore the fact that the average age of the homeless in America is NINE. Instead, of spending money to feed them, let’s drug test their mothers only to find out that “issue” is infinitesimal and a bigger waste of revenue dollars than it would be to simply let them eat.

When will the developed world learn that it’s horrible to let our own people starve to death, regardless of their circumstances? Politicians love to play the shell game with us when the majority of voters don’t want to take the time to watch for the ball. But if they looked beyond a pundit’s dollar amount quote and instead at the percentage that social welfare takes, comparing that to what it would cost the “job makers” to either pay enough that social welfare wasn’t our tax burden or maybe pay into that tax burden, would it make a difference?

I have to be honest. I thought we were better than this. I felt somehow protected from the hell that I’ve seen other people live all over the world. And I can honestly say I’m sorry that I hadn’t thought to notice the insidious beast that lurked within our very society. And today I’m afraid for everyone, what it means and the seemingly insurmountable challenge of changing things for the better. We need to start being productive members of society and working towards the greater good. And I’ll start by not letting fear silence me.

What I've lost and What I've Learned

I know it’s been a long…LONG time. I’ve had one hell of a past few months. And I honestly didn’t want to come out here and moan and groan about my life. So, I might have waited until I had something real to say. I might have been inspired by Jamie Lynn Sigler’s coming out about her Relapsing MS as well. I know she’s endorsing a treatment option, but it’s also about her accepting the fact that ignoring it would not make it go away. Her story is interesting because, while I came to grips with that sooner, it resonated with me. On one hand, by the time I got my diagnosis I knew something was wrong and the only way we could make things better would be to identify the devil we were dealing with. It was still a huge shock. It felt like part of me, my life and my future had been ripped away from me. I had yet to discover what I'd been given in return. 

It’s hard to believe that a year ago, around this time, when I started to get wacky, seemingly unrelated symptoms that what I was experiencing was the disease being active in my body. And at first, it was all about what was I’d lost, or what I thought I’d lost. But there’s a lot about me I’ve learned along the way. I learned the power of self-advocacy. Sometimes Google can be your enemy, right? In the quest for information, sometimes you get a lot of garbage. At that time, I was looking for facts, not people’s personal experiences. I’m personally a fan of supported, scientific evidence rather than a particularly vocal handful of people among the statistical outliers.

I’ve learned the power of the support of my care team. Our healthcare system isn’t perfect, and it’s expensive, but there are a multitude of options available. I like having doctors and nurses that listen to me. I don’t have to put up with those who patronize me or make me feel uncomfortable, especially when I’m a very receptive patient when I can trust that all my concerns are being addressed. Who knew that what I’d learned about my diagnosis process for MS would give me the tools to be a better parent.

My teenage daughter has always had an unusual personality. She worried too much, fixated on details to the point of being obnoxious about it, and had some social “quirks” that charmed adults who didn’t have to be directly responsible for her well-being. Those who had to take care of her would often come to me exhausted by navigating the emotional minefield that seemed to surround my daughter. There were moments that stand out while she was growing up that I now see in an entirely different light.

The fact that Sydney walks on her toes would be indicative of sensory issues. The fact that she once asked my husband, who had been upset by something while we were out shopping for things for our wedding, “Why is your face like that, Daddy?” I just thought that was an odd way of asking why he was upset. It never occurred to me that she was literally asking him what his facial expression meant. In 1^st grade, she was a button pusher and a principal’s office seat warmer. I was asked to consider having her tested for ADHD. She came back as having anxiety, but counseling didn’t seem to be helping. All it did was drag up emotions that we’d have to help her reign in for the next three weeks until her next session.

She worried about everything. Anxiety would have been a perfectly logical explanation for how she reacted to the world. However, by the time she hit the 5^th grade, I knew there was something more. When she went into 6^th grade she told me she knew something was different about her, something VERY wrong. Her father, my 1^st husband, was a major road block when it came to her doing therapy. I told her to go to the school counselors. If we could get them to recommend therapy, that we strongly suspected ADHD and she needed the help of a professional, my ex might be forced to listen.

“Something’s different, I’m different. No one hears me.”

I couldn’t get those words out of my head. It occurred to me that the “block” wasn’t anxiety itself. It was something about her ability to communicate that was off. But she was bright, verbal, VERY verbal. But she couldn’t handle sarcasm or humor sometimes. She didn’t hear her own tone of voice and often didn’t understand what we thought were clear explanations as to why her behavior had upset us at any given time. She would come off as stubborn, rigid, defiant, disruptive. All of them are behaviors of a dramatic teenage girl. But I knew there was more involved. If people weren't going to hear her, I would be her voice.

I needed help figuring it out. MS is a diagnosis by process of elimination. This became the case for my daughter as well. Finding credible sources to help me identify a problem that shares symptoms with a multitude of other things was next to impossible. I'm a mom, not an expert on behavioral health, or an educator. I was ready to learn how to be the kind of parent I needed to be. I just needed to know where to begin. I would guess, and not quite hit the mark. No one seemed to hear me either. And when they did, they were as lost as I was.

For over a year I would push the therapist to help us figure that out. And in the meantime, her unnamed issue would consume her life and ultimate would take its toll on her mental and emotional health. Time was no longer on our side if we expected to reverse that damage. It was so pronounced that even my ex-husband, who is absolutely stuck on not labeling what might be wrong with our daughter, was ready to recognize the elephant in the room. I was tired of the therapist who did nothing but patronize us. When she left the clinic and we were assigned a new therapist, it was a blessing.

I’m running out of energy. I can’t be on call 24/7. I put my foot down and asked the single most important question I would ask in all of this. “Is there something like Asperger’s Syndrome for people who don’t entirely fit the autism spectrum?” I mean it is a spectrum…right? The school psychologist listened to the school social worker, my girl’s guidance counselor and me list off behavioral traits. It took someone who’s only met my daughter twice before to encourage me to Google, “NLD.” That’s short for Nonverbal Learning Disorder, which is largely described as an inability to comprehend and properly utilize nonverbal communication.

Bingo

I prefer the term “Neuro-atypical Thinker”, and I think she does too. It explains so much! I’m still in a bit of shock, because right now is nightmarishly hard. Though we caught on to this soon enough to do something about it, giving her the tools for a happy future we’re simultaneously dealing with the fact that things had to get bad for my daughter before I stopped allowing people to put me off and instead pushed for an answer. And knowing the devil we were dealing with gives us the ability to find solutions to our challenges. As relieved as I am, I cried. I’m heartbroken for the little girl that lost so much of her happiness as a child to us not understanding her. I can’t help but feel guilty for all the times I was angry with her for her behavior, for not “getting it” when I was the one who wasn’t “getting it.” Yet there’s a much brighter future for my daughter and for those of us who love her and my being diagnosed with MS gave me the tools to keep pushing for answers and to be an advocate for my daughter. 

The Spoon Theory written by and spoken by Christine Miserandino

I’ve been searching for an effective way to let my teen know understand my MS. I told her about what it does to the body, how it makes me tired and how it effects my body. It was clear that she didn’t understand because her eyes glazed over half-way through my multiple attempts to explain what’s changed about me. Of course, I also am still discovering what has changed as well, as you know. When I posted my last blog to Facebook, a friend of mine asked me if I knew about “The Spoon Theory.” He told me that he’d tell me about it when he saw me.

Patience isn’t my strong suit, so I hit up Google and found Christine Miserandino, a writer, blogger, speaker and an active lupus patient advocate. Her “Spoon Theory” is about communicating chronic illness to others. You can either read it on her blog, or you can watch the video. Honestly, she’s such a character, I was very glad when I found the video posted below. Now she has Lupus, which is different. But because there are many symptoms that are shared with MS, it was one of the possibilities that had to be eliminated in order to give me my diagnosis. But for those who have trouble getting people to understand how it feels to have a chronic illness such as Fibromyalgia, Lupus, MS, and Rheumatoid Arthritis, this might help. 

What you can't see may surprise you

It’s been a crazy few weeks while I figure out this rather nebulous “thing” that’s inserted itself into my life. I keep thinking that I might have imagined the symptoms and if I ignore my MS it won’t be real. I'm not used to having physical limitations. Ask my mother, I’m the queen of burning my candle at both ends and have done it since I was nine or ten years old. I just truck right on through and then wonder why my body suddenly tells me I've had enough. So when my symptoms manifested rather largely on a Tuesday, they didn’t get in the way of working the crazy hours I’ve been working. And I did not give myself time to recover at all so that on that Friday of that week I crashed and burned.

Let's just say that I didn’t have a true grasp of the concept of fatigue being a physical symptom until I had to call my husband so that he could give me a ride home from work. Mental exhaustion I'm familiar with, as I am with sleep deprivation and how depression makes you feel like sleeping. This was my body feeling like I was loaded down with sandbags, with my brain still fully alive. I took a nap but then had insomnia that night. The truth is that my immune system is attacking my central nervous system. That by itself is hard on my body and stress (physical and mental), heat, fatigue, or illness make it worse. Even after all of that, I feel stupid for being freaked out by it.

It’s very interesting having an “invisible disease.” The things that have changed continue to surprise me and aren’t things that are immediately obvious to others. I spend a lot of time reassuring those who love me that I'll be fine. And of course, I will. But that doesn't mean my life isn't challenging in a way it wasn't before. When I’m feeling good, I can’t just do “all of the things” to try to compensate for those times I’m not good. It's difficult to enforce my limits with others when I don't seem sick.

I'm sure people wonder how I can run 2-3 miles 3 times per week most of the time but also need certain accommodations for physical limitations at the same time? It seems asinine in my own mind that I would consider getting a handicap parking permit while continuing to be a runner, and maintaining a career where I stand 99% of the time. When I asked my neurologist about it I expected him to at least roll his eyes.

But he didn't, of course. He listened to my internal conflict over what is "knowing my limits" compared to "giving up." It was particularly awesome that he shared his own personal experience with pushing his own body past its physical limitations. (I can't say I'm overly surprised that he's a triathlete.) I had to be reminded that the human body is only capable of so much, and on top of what is normal, I have MS. If I want to maintain my quality of life, I have to make smart choices.

So what does that mean? I know if I want to do something that involves slightly less than ideal conditions, I have to to make adjustments in order to make that possible. I budget my energy and choose my battles. If I want to go running on a regular basis, I should try to do that before it hits 70 degrees outside. If I want to do a race as temperatures rise to the 90s, I slow down and understand the possible pitfalls. I'll be honest. It still doesn't seem like this is my life I'm talking about. After all, I'm the one on the left in the photo below. I'd just done a 5K with my 13-year-old daughter at my side. It was fun and I finished strong. And doing it felt important in a way it never had before.

My Daughter, Sydney and Me. 

The Wall

Yeah, it’s been awhile. But I didn’t want to just run my virtual mouth in this space. I don’t want it to be a daily piss and moan blog because who really wants to read that? I did feel inspired today to share my thoughts with all 4 of my readers. ;)

I’ve been struggling, since my diagnosis, to make peace with the fact that I have MS. After all, confirmation that all of the weird crap that was happening to my body had a name and while it’s sucky, it isn’t the worst case scenario. I also understand that a positive outlook is vital to my overall well-being and in all likelihood have a hand in determining the course of the disease. I’ve had a lot of time to mull that over.

A friend, and former neighbor of mine was diagnosed at the end of last summer. And while I’m significantly older than she is, she’s excellent company. She’s so vivacious that it’s difficult to be in a bad mood with her around. She also happens to have kids that my kids love to play with. When I did the 2016 Walk MS: Madison, WI with my family we met up with hers.

And while no two people’s MS is the same, she understands what I’m going through in a way that someone without MS can’t. That was a hug that was a long time coming. And it was nice to talk about the stuff that sucks in the midst of catching up a little over that 3 miles.

The most memorable thing about that day occurred early on when we watched someone go by in a wheelchair and she asked, “Does it freak you out to see that?”

My answer? “No. The possibility of going blind freaks me out more.”

Before then, that particular fear was something I had only ever shared with my husband, early on in the diagnosis process. I can’t think about that for too long without coming a little unhinged even though total blindness is as likely as the possibility of ending up in a wheelchair. Statistically speaking, it's not actually the norm. But the unpredictable nature of the disease is that it could happen without warning and there's nothing I can actually do to prevent it entirely. Suffice it to say that when I’d learned that my optic nerve had not yet taken damage was one of the best things I’d heard since the results of the spinal tap came through.

I went on a run this morning. I have a race at the end of the month. It would be nice not to burn out in the middle and I’ve slacked off a bit in that department. I’d been going on walks here and there and I really don’t enjoy it as exercise. That’s more of a social activity for me. I love running no matter how slow and un-glamorous I am while doing it. It gives me time to think. It’s an activity I love because it shows me what I am capable of physically. I’m 42 years old, overweight (though cutting back on my portions and adopting better eating habits has helped me lose 25 lbs. since the beginning of the year), and of course there’s that pesky MS thing I’m supposed to be making peace with.

When I run, I make a choice to actually do it no matter what. I do it in spite of how tired I am and much it hurts. Training for a race means that I challenge myself to run farther each week before I hit “the wall.” I become able to run farther because I don’t give up. I love to run because I’m in control even though I’m really not. I’ve begun to push myself again and in that, I’m relearning my body. I muscled through shin splints, pushed myself over a hill I’d forgotten to expect and I punched a hole through the wall when I hit it. What I realized was that while I’m out of practice, I don’t run like I have MS, I run like I don’t have MS. 

I don’t have to make peace with it in order to have a positive outlook about it. 

Holy crap what a concept! MS sucks. There's really nothing good about it. Why on earth would I want to make peace with it? I just know that I'll always find a way to keep going because I know exactly what I'm capable of. 

When too much information doesn't have all of the answers even if I have a really awesome husband named Tom

Have you ever had so much to say that you didn’t know where to start? My original purpose of this blog had to do with my recent diagnosis of MS, ironically, during MS awareness week. Yep…this girl’s definitely aware. And I’m the type of person who likes to busily look for solutions to the big problems so that I don’t fall apart. It’s not as cold and calculating as it seems. I am simply aware that I don’t always have the luxury of melting down in the moment. So I like to get all of the information, deal with it, freak out afterwards.

MS is such a pain in the ass this way. There’s information. But I’m not entirely convinced that most of that comes from people who know what the hell they’re talking about.

Think about it this way. When you read “my recent diagnosis of MS” some of you know pieces of what it is, whether it’s a list of symptoms or a memory of someone you knew who had it. I know that the first time it had been brought up to me, this was the extent of my knowledge of what MS was. And there are those who have up close and personal experience with MS. They either have it or they know someone who has it. And this group feels strongly about how one should approach having MS. Now, make MS a disease that is diagnosed by eliminating all other diseases, disorders and medical conditions that share symptoms of MS. And there are as many different experiences between patients who have the disease as there are patients with the disease. Though statistically speaking, it isn’t at all a certainty that I’ll need a wheelchair or that I’ll become disabled before I need to retire. However, if I lose my mind someday, chances are it’s because I forgot where I put it.

I stayed off of web forums during the diagnosis process. Nothing is more misleading than vehemently declared anecdotal evidence that EVERYONE needs to follow. And if anyone tells you that getting spinal tap is paramount to torture should try being the mom at Warped Tour. But as I’m dealing with the changes and challenges of actually living with it, I’m scouring the internet for stories of people who have had similar concerns. It was my hope that others could shed some light on what they’ve done to either make it better for themselves, or to cope with the reality that there are some aspects of this that are un-fixable. There are many things about health and wellness, pain management, fighting fatigue, fighting the bankruptcy inducing healthcare system in this country…

(Yeah, I went there. You don’t want to know what I just deleted.) 

Aaand…back to the point. The advice out there... Some of it speaks to me. Some of it is total garbage. There’s a plethora of information that floats somewhere between yea and nay. What I could learn about my situation has been helpful, if for no other reason than to know I’m not alone. But there are things people don’t seem to talk about and even then literature you get upon diagnosis danced around but ultimately failed to answer some of my questions. It doesn’t take a degree in medicine to tell me that having an incurable disease with an unpredictable prognosis will mess with a person’s self-image and emotional well-being. But of all of the contributing factors discussed repeatedly, there wasn’t a single reference to the possibility that having MS would change my face.

Fuck.

I’m not fishing for compliments or sympathy. I'm just being honest. I’m not saying this to get people to tell me how bad it isn’t and how much worse I could have it or that they don’t even see it. I know all of these things. I know it’s superficial. But it sure as shit isn’t nothing. It’s my face. Today I freaked out. Tomorrow I'll work on how I'll deal with it.

Blah...blah...blah...and some Chicken Shawarma

What does a person write on the first post of a new blog? It’s been awhile since I’ve blogged, much less started a new blog. I lose interest in it I guess. I like Facebook because the information hits a lot of people quickly. I like Twitter because it restricts my wordiness a bit. But if someone wanted to get to know the real me, those places only reveal things like my unhealthy infatuation with Richard Armitage and my weird sense of humor. Oh! And of course since I parent 3 kids (2 at home, 1 grown), work for a living and basically have no life, I post photos of my food, pets and kids.

Now, I won’t promise you that I won’t do that here from time to time, but a blog gets a little more personal. I also don't claim to be interesting or that you'll get my sense of humor. There might be TMI. I might say things you don’t agree with or don’t like. But since this blog is about me those things are easy to avoid by not reading my blog. I’ll try not to be an asshole about it. I said try. I would appreciate the same in return. I'll post something real later. But for now, here's a photo of some chicken Shawarma I made last week.