Rae vs. the Relapse: Round 1! FIGHT!

Wow, I can’t believe it’s been so long since my last post.  Life has been happening… in that sort of busy everything-comes-at-once sort of way.

Relapse-a-rama

Right now, and for the last week or so, I’ve been dealing with an exacerbation (or “relapse”) of multiple sclerosis.  My back on the left side has been shifting between numb, tingly, and burning – and for the first part of the relapse, the same was true of the left side of my chest.  (Nothing is as strange feeling to me as a completely numb boob that I can feel with my hand but not feel on my chest.) Add to the mix a few seizures (which were totally unexpected since I’ve been mostly seizure free this year) and some crushing fatigue and you’ve got a recipe for “Me on a Medrol dose pack.”

One thing that is different about having a relapse here in Chicago from when I had them in Los Angeles, is that my current MS neurologist (Dr. J) has never ordered Solumedrol-IV drips. (I’m using the term “MS Neurologist” to differentiate him from the neurologist that I see for my seizures, who works at the same hospital.) In LA, I was getting Solumedrol drips fairly regularly – probably once every 6 months or so.  In fact, this is only the second relapse that I’ve had since moving to the Windy City 2 years ago, and both times, they were handled with oral meds.  This is not a complaint. I’m not a huge fan of the 3-5 days of drips, but they do get the job done thoroughly.

Dance of the Meds

When I spoke with Dr. J on Friday, he let me in on some news about the progression of my MS that I really didn’t like.  He was comparing the MRIs from beginning of March last year to ones taken at the end of July of last year… only a 5 month window for change… but he said that there were significant changes.  Apparently, many of my lesions were/are growing in size and number, suggesting that the Copaxone that I inject nightly either isn’t doing its job to slow progression, or isn’t doing it well enough for him to want me to stay on it. He suggested that we talk about my getting on Tecfidera (BG-12) at our next appointment (which is June 3.).

So why is that problematic?  Because you can’t get pregnant on Tecfidera. Copaxone is the only disease modifying drug for MS that is tested safe for becoming pregnant… and I have been working to get off all drugs that would negatively affect a pregnancy for over a year now.  I am, for the first time in 6 years, not on anything that could badly affect a baby.  No Cymbalta, no Abilify, no Topamax.  The only drug that I take now that could have any affect on the pregnancy is Nortriptyline (which I take both to deal with MS pain and depression), and it’s been considered one of the safer antidepressants to use during pregnancy for years.  I am, however, considering dropping it too if we make the choice to go ahead and start our family.

It’s All About Timing

I am strongly considering getting on Tecfidera right now anyway, and just stopping taking it when we’re ready to conceive. Adam and I have so many mutual goals right now that are at odds with having a baby right now: (1) achieving optimal body weight, (We’ve been hitting the gym 4-5 times a week for months now.) (2) buying a house, and (3) finally going on a vacation somewhere together.

I know that it would be better for the pregnancy if I were not overweight. Right now, I’m 70 pounds heavier than I want to be, but I’m on course to be my optimal weight in about a year.  A year is also about how much time we need to save up the downpayment for a house. Right now, we live in a 2 bedroom apartment. Could we make room for a baby? Sure… but it’s not ideal. And then there’s the very real fact that kids are like money vacuums. The likelihood of Adam and I ever getting to go to a resort together when we have an infant is ridiculously low.

So, it seems, from my perspective at least, like the smart move would be to switch to Tecfidera for at least a year, and put off becoming a mother until our situation is more ideal. At least I’m not baby-crazy like I was this time last year.

I’m also hoping that The Assistance Fund will work with me to pay for Tecfidera if I switch from Copaxone. Both drugs cost more than $50,000 a year, so the change shouldn’t affect how much they’re paying, if they’re willing to continue to help me out.

Right Now

As for how I am today: I can feel my chest, my back is sort of “buzzing” or fuzzy feeling, and I’m not crazy fatigued. I haven’t had a seizure in the last 3 days. This is good for not being done with the dose pack yet. I’m on my second to last day.

If I’m lucky, I’ll get most of the laundry and dishes done today before therapy.  Hope you’re all doing well.

Advertisements

Disability & Your Relationships With Your Self And Others

Judgment. It’s not just for other people to place on you. Every one of us has certain standards and ideals that we hold ourselves to. I can’t tell you the number of times that I have read a statement that goes like this: “I’m not the [wife/sister/mother/friend] that I want to be.”  This is almost always placed in the context of disability, suggesting that MS, Lupus, Fibromyalgia, a cancer of some kind, or even seizures are to blame for the reason that the writer does not feel good about themselves.

It’s Not About What You Do. It’s About Who You Are.

If there’s anything truly helpful that I’ve learned over the last 7 years of battling MS and the last 5 battling seizure disorder, it’s this: You are not your disease(s). To everyone else in the world, you are the victim of your disease(s), and anyone who loves you wants to fight the disease itself because they see how it negatively affects you.

I had a particularly hard time differentiating my self from my ailments for a very long time. I thought that because I had these afflictions that they were a part of me – and that maybe they even existed as proof that I wasn’t good enough as a person. (Otherwise, why would God let me end up this way?) I considered myself a burden on my family and my husband. I hated myself for having MS, a seizure disorder, PTSD, and depression. I consistently put myself down for not having a job, for not doing the cleaning around the house, and for not being “my best self,” thinking inaccurately that “my best self” existed free from the challenges of disease. I became suicidal because I thought that the only way to end not only my suffering, but the suffering of anyone who had to care for me or bear witness to my pain, was to end my life.

When I was in the mental health hospital, on a 5150 (involuntary psychiatric hold), my husband said something very important to me, that I hold in my heart to this day.  He said, “MS or no MS, seizures or no seizures, you are my wife and I will always be here for you – because I want to be. Nobody held a gun to my head and said I had to marry you.  If you kill yourself, that’s leaving me, and I don’t want to spend the rest of my life without you.”

Prior to that, I hadn’t, even for a moment, considered that he wanted to care for me. I hadn’t let myself believe that I was desirable as a companion, regardless of ailments.  The delusional thinking that I was engaged in had me convinced that my disability made me bad for him, worthless as a person, and that by killing myself, I would be doing him (and the world) a favor. It never dawned on me that I was more than the sum of my problems. I was also me.

Finding Your Worth With Disabling Conditions

It has only been a few months since I started working with a therapist (Let’s call her “K”) to find out who it was that I had become and to get myself on a path towards who I want to be.

When we first met, K asked me the question “Who are you?”, the answer I gave was, “I’m a housewife who is on disability because of MS and seizure disorder. I failed the bar exam twice, so I am not a lawyer.” I defined myself strictly by my career and my disease. I ignored the fact that I am a woman first, a daughter, a wife, a person with a unique viewpoint on the universe. I forgot that there were other important aspects to my personality, like loving to sing and to cook and to help friends. I defined my worth by my ability to make a paycheck.

And that way of thinking had held true for a long time before I started working to change my way of being – for years, defining myself by what I could not do caused cyclical suicidal thinking.  I was, for a few years, a very miserable person.

It is only recently that I have come to realize that my worth as a person is not determined by how much money I can make, what things I can do, or what other people’s opinions of me might be.

She had me create a chart that said on one side “Worth =” and then I had to fill in the other side.  Together, we examined each statement that my “fill in the blank” chart created to see if the thought was rational or an ANT (Automatic Negative Thought) that we could challenge.

Sometimes, the statements were just plain silly – not even a believable negative thought, but just thinking that didn’t make sense.  Things like “Worth = Not Needing Help.”  I actually had let myself believe that I was only a worthy person if I never needed help. I had to ask myself, when confronted with that statement, “Who, in life, doesn’t need help from time to time? Does needing assistance actually negate a person’s innate worth?”  The clear answer was, “No.”

Then, there were other statements that were very true, like “Worth = Irreplaceable/Precious.”  “Precious” means that something is of great value and is not to be wasted or treated carelessly. It’s true that there is only one of you in the universe for all time. This makes your life immeasurably valuable. Because of that, you should not waste your life or treat yourself carelessly.

doctor

I was forced to admit to myself and to allow myself to really believe the truth: that being unique in all of time and space means that regardless of how I feel about myself, I am valuable and deserving of care. It’s objective truth.

What You Do Is Not Who You Are.

No matter what actions I take in life, it’s not going to change a few very basic things.  I will always be a human being (as opposed to “a piece of shit” – regardless of what my inner bully might want to shout at me). I will always be a daughter. Because I my parents chose to have another child, I will always be a sister. Because I have been lucky enough in this life to meet a man who loves me as deeply as I love him, I will always be a wife.  Nothing that I do or fail to do will change these designations.

So, I had to ask myself the really tough questions… “What does it mean to be a good human being? What does it mean to be a good daughter or good sister? What does it mean to be a good wife? What is goodness?

After reading through the dictionary and thesaurus and taking some time to really think about it, I’ve determined that a “good” person is one who is virtuous, genuine, and commendable; kind and benevolent.

Regardless of physical status, anyone can still be “good” and “worthy.”  Being “good” is a question of character, not whether or not you meet the arbitrary goals you set for yourself. It’s about being loving, sharing of yourself, and making the effort to connect with others, emotionally, on a genuine level.

So, stop confusing your worth or your goodness with your ability to do certain things.  A genuine connection with a precious person is all anyone could want out of a relationship.