I am not my illness, but I could go there so easily...

“It would be so easy to sink into my illness and hide.”

When my Psychiatrist asked me how I knew when my depression level was high and asked me if I ever had thoughts of suicide and self-harm, that was my answer. I know what depression is. I’ve had bouts of it here and there, mostly in response to stressful situations. It shouldn’t have surprised me that for most MS patients, depression is a symptom. Not only is it depressing to have an incurable disease that many people don’t understand, but it is a disease that causes damage to the brain. Yet I was surprised how real it was. 

Sclerosis=scars; Multiple=many

In my Brain and Spinal Column

(Just take a moment to process what that means and could potentially mean over time. No, I can't just stop thinking about it and just get over it.)

I really don’t know how to be sick, to tell you the truth. I’m ambitious. I have goals. I’m a runner. I’m a business owner. I have political aspirations (you have NO idea how big…well some of you do, don't you? 😀). I want to be supermom. I want to play with my kids. I want to have a financially stable home.  (Yes I have my GoFundMe up because we're not out of the woods yet. I'll be shutting it down soon though.) I want a clean, organized house. I don’t want to rely on others to do it for me. I hate the fact that my working fewer hours at a job that is very physical has put financial stress on my family. I don’t like asking others to take care of me no matter how desperately I might need that. Asking people to do the things I used to do just sucks.

Having to remind people, having to ask multiple times…kills me by inches. It tells me that I am a burden to those around me. I’m sort of the brains of this operation, as in I keep the schedule, the books, and the duty roster. And I keep getting reminded that I’m not always equipped to do that, not when I’m responsible for keeping all the other plates spinning at this circus too. Not when I physically refuse to stop because my surroundings will be depressing otherwise, am under a tremendous amount of stress while I try to compensate, and I then begin to have cognitive issues as a result.

I’m in a hell of my own design.

and

Just because there’s a smile on my face doesn’t mean I’m not struggling.

I didn’t raise my younger kids to “pitch in” as much as I should have. And teaching them what is expected makes every task more exhausting in some ways. I want people to know that I have a very loving family who helps me whenever I ask. And we’re working together to find a system that will make all the above easier. It’s just that getting such a thing together takes time, planning and growing pains. Success doesn’t come without effort. And sometimes I feel like my energy is wasted on keeping track of all the plates even when someone offers to take over a couple of spins here and there.  Because the moment I take my eyes off them, plates start to fall and it's more work to get them started than if I’d just kept them going. Sometimes the loud crash as it happens sends me into a fit of giggles. Come on, the human condition is funny when it comes to how imperfect we are. 

The truth is, I feel like a failure.

For the most part, I can see the humor in it because my frustration with myself and the situation is greater than my frustration with anyone around me. However, humor takes energy too and sometimes the struggle threatens to overwhelm me. It really isn't about them, it's about me and what I was once capable of on my own compared to now. 

Let me be perfectly clear: No, I don't want to die. 

Life is hard but I do have a life worth living. However, if I said I didn't struggle with the temptation to give up on a daily basis, I'd be lying. Because it would be so easy to sink into my illness and hide. 

And here are the reasons why I don't. 

I may not look like a runner but...

I did the 2017 Crazylegs Classic 8K a couple of weeks ago. That was the longest run I've done since I’ve been sick. I admit it cost me dearly, but I loved every single moment of it. What is it about a sport that really is almost every other sport’s punishment that makes me love it so much? There’s a cliché out there about not being the same person that finished the race as the one who started it. I’ve had several races like that in my time. My first 5k was one of them, as was my Half-Marathon a couple of years ago. So was this one. It was hard, it hurt the entire time, and I finished because I was determined to finish it no matter what. And I grinned like a damn idiot through most of the race.

Determination…

I’ve learned a lot about mindfulness and stress tolerance recently. And what is running, if not an exercise where success is based on exactly that? The harsh reality of my life is that I’m always in pain whether I choose to mention it or not. Some days are worse than others, and some days it’s just…there. I choose to muscle through it for the most part because I absolutely hate the way the meds for nerve pain feel in my body. And when every single medication for MS and its symptoms has a side effect of weight gain and fatigue and painkillers and muscle relaxants can be addictive, I only want to take what’s absolutely necessary. I’d rather feel pain than not like myself. 

It’s a mental battle, just like running. The funny thing about being a runner with MS is that MS does make running harder, but running doesn't make MS harder. And if I'm going to hurt anyways it's going to be on my terms., I will not give up any ground to my illness without fighting like hell for it. 

The best part about doing Crazylegs is that I remembered how much I loved running. I’m not fast, and I probably look more like the Bee Girl from a Blind Melon video than I do a Nike ad. (If that doesn’t age me I don’t know what will.) And just when I thought I’d never do it again, I’ve registered for another Half-Marathon. Mentally, I'm ready for that. Now I just need to prepare my body for it. I’m looking forward to seeing what I’ve become by the time I’ve reached that finish line. 

More than just a diagnosis

I get all mad at people who don’t use the resources at hand when it comes to taking care of their personal health. Why would someone not want to get better? Why would you deny a course of treatment that could make recovery faster? Did I mention that I'm a big ol' hypocrite?

It’s time to eat my own words. I’m guilty of this myself. I’m just now finishing up with a 3 day IV course of Solu-Medrol in response to an MS flare up. I’ve been diagnosed for a year, and this is not the first time I’ve been offered this option. I’ve taken and finally rejected other drugs that would mitigate symptoms, done PT, done my Copaxone injections and stuck with that until after a year I found that I couldn’t tolerate it so well. I’ll be switching that up as soon as it’s gone through the obstacle course that my health insurance company requires for coverage. I can’t say I totally blame them since they’ll be covering a $26K per year treatment program. I’ll be hitting my personal out of pocket maximum in short order, no doubt since Insurance doesn’t cover everything to do with my MS. But I’m not going to be so behind that I’m drowning this year thanks to the generosity of those who have supported me

But this last year has been a wake-up call. I’ve tried to live my life as if I didn’t have MS, even while clearly I was unable to do that. After three days of IV steroids, which isn’t altogether pleasant on its own, I actually feel better than I have for quite some time. And I’ve been asked twice today, by my husband and my bestie, “Why didn’t you do this sooner?”

That’s a really good question, one that’s not simple to answer. And by the time I’d been asked the second time, I had my drive into the hospital to find my answers. It all boils down to stubbornness. Yes, Tom and Krissy, you’re right. I am stubborn. But I was so with the best of intentions. I year ago I had my diagnosis and I was prepared to move forward from that point.

It took me about a year to figure out that it wasn’t just a diagnosis. This is my life. And I thought that the best way to deal with it was to muscle through. Push past it. I am not my MS. I could overcome it. I would get through it and defy the odds. My life would be as it always was. I would not succumb to this disease and I would be okay. I needed to push forward, and not give myself time to process it beyond the superficial. I thought that if I dwelled on it, it would catch up with me. I was running away from it, and the first time I was forced to stop, I realized I was terrified.

So by allowing  physical therapy, and language pathology, chiropractic care, and the Copaxone, (apart from my visits with a psychologist which I’ve never claimed not to need at various points in my life) I thought I was being proactive. I thought I was doing what I was supposed to do. And by about November I was falling apart with the pace I’d been living my life. Bills were piling up and not wanting to be burden to my family I felt an obligation to keep up that momentum even though I was sacrificing the rest of myself in order to do it.

So why did I feel like I had to do everything the hard way? Because I don’t like to need help doing anything. And admitting I have MS means that I definitely can’t move forward without help.  And that scared the hell out of me. Because it’s more than just a diagnosis. It’s my life. But as it is also my husband and kids’ lives too, I took another step forward, and took the help that I’d been offered. And I’m better for it today.

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.

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.