Sunday, February 12, 2017

When Falling Apart is a Luxury

You don’t learn how deeply broken our health care system is until you really need to use it. It is one of the places that points a glaring finger at income disparity in this country. I should know because I can’t afford my own healthcare. The cost of insurance alone that comes out of my husband’s paycheck severely limits our budget. And I get that it covers a lot. It’s better than not having it. But not really when we still can’t afford to live regardless of how much we “save” by having it.

I realized sometime over the winter that we were in an untenable spot because I’m trapped by my health and trapped by my income. My job certainly has a high earning potential. But I’m not in any condition to build my business beyond what it is though I was trying to do just that so that I could compensate for the medical expenses that kept piling up. But that meant having scheduling flexibility of someone who couldn’t afford to lose any business within a given month. But the results are that I’m not able to focus energy on my family the way I’d like to. And I’m not in a position for allowing the proper self-care I need to maintain my quality of life. So, when I had no choice but to ease up a little bit without warning, there were some frightening financial ramifications.

BAM! MS is real. And I can’t work 40 hours per week. I have no choice but to heed my body’s warnings. Because if something were to happen to me and I had to stop working for any period, we have no way of financially weathering it. Being Gen-X I’ve worked since I was 15, as much as I could and have never, ever considered slowing down or stopping for any reason up to this point. I’ve spent the past couple of months feeling like a complete failure. But I couldn’t NOT recognize that we needed help. And since I’ve done my damnedest to cover up the fact that I needed help, I melted down on my bestie over a barrage of texts last week that might very well have seemed like it had come out of left field. “I don’t have the luxury of falling apart.”

She “listened,” like good friends do, to me go on about how people raise money for sick people and their medical bills all the time. But since no one really knew I needed the help at all because I refused to admit that I did, the thought of starting one of those crowd-funding things for myself seemed pretty damn tacky. She offered to do it for me because she knows how stubborn I am. And in the end, I realized that this would be a good lesson learned about being humble. Because I desperately needed to buy myself and my family some time to regain our footing.

I typed up my story, and sat with my finger on the button of the GoFundMe page to make it go live, I hesitated. When I realized that this affected more than just me and that my husband and children were going through this crisis with me, I sucked it up and put it out there, asking for only what I absolutely felt we needed. And when within the first 48 hours we’d hit nearly 30% of our goal, I was overcome with gratitude for those who not only donated so generously but those who supported me with kind words and prayers as well as those who boosted the signal for me by sharing. I wanted to thank all of you for giving me the luxury of falling apart, just for a little while because you were there to catch me.

Sunday, January 15, 2017

The Darker Side of an Affordable Care Act Repeal

Warning, this is NOT a warm and fuzzy post. 

When I was told that I had MS, a picture came to mind immediately of my third grade teacher, and a few others who had the disease as I grew up. I pictured wheel chairs, blindness, kidney failure, brain damage...They progressively got worse over time because there wouldn’t be any treatment to slow the progression of the disease until the mid to late 80s.

Health care is by no means affordable to me. I don’t make enough money for that, and I was lucky enough to be one of the people who lost a house in the economic crash. So I join the Millenials in the fact that I’m not doing better than my parents were at my age. What did I do? I did what they want you to do. Pulled myself up by the bootstraps, created my own job and started a business. My business is quite successful. I love it. I might love it more if more people could afford to get their hair done a little more often. I would love it more if I made more than just what I needed to cover bills and not have to feel sick when we need new tires for the car or I want to do soccer for my kid. That’s just economics. It would be nice if more people could afford more than the essentials. And every year we’re drowning in medical bills in spite of having health insurance. And I know I’m not the only one.

Life isn’t easy. It would be easier if I could have a regular schedule that allows me to work when I’m at my best and rest when I’m at my worst. But the day-to-day struggle of some of my clientele does often mean a feast or famine booking pattern. It was looking better for a bit, business had picked up. People were doing better. I was doing better. There was a light at the end of the tunnel. It isn’t easy, but things were starting to seem a little brighter for all of us.

2016 was a truck load of suckage all around and add my diagnosis to that, and I really couldn’t wait to ring in the new year. I’m LUCKY that I only have MS. It could have been worse. But MS is a funny disease, because my life could change tomorrow. What I have today could be gone. (Yes I know it’s a possibility for everyone, but knowing the face of the enemy that lurks behind the corner makes me uneasy at times.)

It's an entirely different thing when you're watching Congress sabotage a health care system that is directly responsible for your quality of life in the face of an incurable, progressive, potentially crippling disease. Treatment in the form of a 3X per week injection is a $5000/month prescription. And treatment means slowing the progress of the disease.

Add the fact that I needed one CT Scan, 6 MRIs, 3 trips to the ER, a Spinal Tap, 3 appointments with a spine specialist, a cortisone injection in my neck, 2 rounds of Physical Therapy, two other neurological tests, and about 6 separate visits with my Neurologist, and about 6 other prescriptions per month. Thank God my chiropractor simply takes my insurance at face value and has, out of her own kindness, not required the portion my insurance doesn’t cover per visit. That was last year. And insurance doesn’t pay for all of it. I hit the out of pocket maximum, but the clinic visits still require a co-pay of $40 for a specialist. Can I say that I have absolutely no idea how people who get rich off of the misery of others (i.e. a for profit health care industry) live with themselves?

As my MS is now, I have problems speech, memory, swallowing, movement, balance, vision, hearing, fine motor function, and touch-sensory input. I’m in pain every single day of my life. Yet, it’s manageable. I’m still happy to be where I am in so many ways. My speech pathologist asked me what my goal was. I told her it was to live as well as I can for as long as I can. And it can actually be that way for me so long as I can continue with treatment as I need it, as long as I’m allowed to take care of myself. At minimum, as long as I’m able to have a $5000/month injection that I never see a bill for. As long as there’s no lifetime maximum. As long as I cannot be denied insurance coverage…

But how can I draw any other conclusion than the fact that The Republicans don’t give a damn about any of the above reasons when the Senate voted 51 to 48 for the following:

1. To end coverage for preexisting conditions, veterans benefits, and aid to rural hospitals.
2. To remove discrimination protection for women in healthcare.
3. Against the provision allowing children to remain on their parent's insurance till the age of 26.
4. To cut off funding for the Child Health Insurance Program (CHIP)
5. Against ACA contraceptive coverage and maternity care provision.
6. To direct committees to send budget legislation to defund and repeal the Affordable Care Act.

For those who get health insurance through work, no pre-existing conditions. Lifetime caps for coverage are back for everyone.

Real and disastrous actions are being taken that will affect more than just the 20-30 million people who will lose their health care coverage and the 3 million people who will lose their jobs.

Despite their assertions of this being an action to "repeal and replace," no viable alternative plan has been proposed.

The House votes Friday and yet, no replacement exists. And for the first time in 6 months, having MS scares the hell out of me. And if your position regarding the ACA is about abortion and birth control and your religion…well, good for you. For me its about living with MS and what that will mean. And I have a difficult time thinking that people who claim to love me might have supported one of those legislators that is actively trying to sabotage my quality of life.

Monday, December 12, 2016

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!

Monday, November 14, 2016

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.

Tuesday, November 1, 2016

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 1st 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 5th grade, I knew there was something more. When she went into 6th grade she told me she knew something was different about her, something VERY wrong. Her father, my 1st 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.

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. 

Sunday, July 3, 2016

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. 

Tuesday, June 28, 2016

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.