Monthly Archives: February 2016

Because of MS

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MS sucks. Plain and simple. It does not discriminate. It does not follow rules. It does not affect any two people in exactly the same way. The only thing certain about Multiple Sclerosis (aside from the fact that there is no cure) is it’s unpredictable nature. Learning how to manage the physical symptoms is a piece of cake compared to managing the mind fuck that MS is. I tried to come up with a less vulgar way of wording how it feels, but honestly, “nicer” words simply can’t do it the justice it deserves.

Here’s what I mean:

I was diagnosed almost 13 years ago now. For the first 10, I felt pretty damn good, all things considered. I have always battled crippling fatigue, but I responded better to amphetamines than I do now. In fact, most of my symptoms, although bothersome, were manageable. I worked 10-12 hours per day, earned my Masters Degree, and even managed to hit the gym at least four days a week. Then when I reached the 10 year mark (almost to the day!), things just seemed different. Harder. Worse. Without me even realizing it, symptoms that I had never experienced before began to surface, and long-standing ones intensified. Just when I thought I had things under control, MS showed me that you can never have things under control. Not really, anyway.

Now I’m approaching my 13 year “diagnosiversary”, and although I’ve been fairly symptomatic for the last few years, I am stronger than ever before (thanks, D!). I feed my body with healthy food and I exercise at least 4-5 days a week. I have always been compliant with the Disease Modifying Therapies I’ve been prescribed, yet my body still defies me. It’s very difficult to wrap my head around the fact that I can do everything right on my end, and still be clinically worse than before.

So the real mind fuck becomes maintaining my glass half-full, optimistic outlook, and not feeling defeated by progressing illness despite all my best efforts. The work-around is most likely different for every single one of us, but for me, there is no option. I continue to do what is in my control because so much is not. Then I think about how much worse I could be if I didn’t take control of what I can. It also doesn’t hurt to have a support system that I can really lean on firmly in place.

I’m sure many have heard the expression “I have MS but MS does not have me”. I hate this saying more than I can even express because I really feel like that’s an impossible sentiment. MS most certainly does have me…but that’s ok. It’s not always so horrible. I have been given many blessings along the way that I would not have been given without MS, and my journey has shaped me into quite a different person than I ever thought possible. Because of MS, I am more in-tuned with my body and how I feel. Because of MS I know my limitations but I am not afraid to challenge myself. Because of MS, I appreciate the finer moments in life. Because of MS, I love more deeply and appreciate it more. Because of MS, I am fully present in the moment and I’m able to genuinely enjoy life’s simple pleasures. Because of MS, I became a better educator, and my life became a series of “teachable moments” for my students, my coworkers, and even my own self. Because of MS, I am strong, both mentally and physically, not only because I have to be, but because I want to be. Because of MS, my relationships are solid and ever-growing. Because of MS, I am a more evolved human being, and I’m learning and growing every single day. Because of MS, and also despite it, I will always view my glass of lemonade as half-full. Grab a glass and join me! It won’t solve all your problems, but it can still be pretty damn sweet.

 

 

Never Surrender

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Bruce and I have been together for over 21 years now. We have been through some pretty rough times together, but we have also celebrated many milestones together. If you follow my blog, you probably recall my issues with my body image, and I am so very grateful that Bruce has always loved me, regardless of my size.

The cycle of my life with MS has always followed the pattern of gaining weight from high dose IV steroids (to treat exacerbations), and then struggling to lose thar weight afterwards. It’s hard enough for a healthy woman in her 40’s, but add in the crippling fatigue, neuropathic pain, neuro-sensory numbness, heat sensitivity, and other daily symptoms, and the struggle is magnified by about a gazillionfold.

I stopped working in the fall of 2013 when a particularly severe exacerbation knocked me off me feet. Literally. I improved more slowly than ever before and it became obvious that I would not be able to go back to work. The IV steroids and the prednisone taper left me with over 30 pounds of weight to lose while my strength and mobility were at an all time low. But Bruce cheered me on. He always has.

This week, he posted the following picture of me on Facebook, which I had sent to him, documenting my weight loss in the last year:

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And with this picture, he posted the following:

“I want to recognize my wife, Rennie Leighton Rankin, for how hard she’s been working to get stronger and lose weight since an exceptionally bad Multiple Sclerosis relapse in 2013. The relapse forced her to retire from a job she loved, and go on a course of IV steroids so strong that it caused incredible weight gain. Despite crippling fatigue, poor balance, and loss of some feeling in her legs (among other things) she’s been working her ass off to get back to where she was before the setback. She says she doesn’t see the difference when she looks in the mirror, so I’m hoping this side-by-side comparison from just a year ago will convince her. Through it all she’s always been the most beautiful and important person in my life, and I can’t tell you how much I love her or how proud I am of her.”

So here’s the thing: I really don’t see a difference unless it’s in a picture where I can compare. I’m just happy that today I feel stronger and healthier than I did a year ago. It has taken a lot of hard work, both physically and psychologically, to get to this place. The place I’m referring to is the place where I accept my body for what it is. It has been a lifetime battle, and it will always be there. But these days I’m more forgiving of myself because I finally recognize that I have so many obstacles to overcome just getting through the day. I am learning to give myself credit not for looking better, but instead for how hard I work.

I would never post a side by side, full length selfie on my own. In fact, I seldom take or post a selfie unless I’m with at least one other person. Conveniently, with apps such as Timehop or memories on Facebook, I am reminded every day of my progress with pictures from this day in years past. I have actually been documenting it with similar side by side selfies, but only for my own validation since I will only get on the scale under extreme duress.

When Bruce posted this picture, I was blown away by his words, and then again by the response from friends and family all over the world. To have others appreciate how much I’ve gone through over the past few years to get myself back to a stronger place, both physically and mentally, is confirmation that what I’ve done wasn’t for nothing. While ultimately we must be satisfied and at peace with where we are in life at any given time for ourselves, and no one else, validation of our efforts  from others  is important as well. It allows us to see that we are not alone in this journey, especially when that path is shared with a debilitating illness such as MS. Not a day goes by without me thanking my lucky stars to have so many amazing people who support me in my journey. I couldn’t do it without them.

This is not, nor can it be, a solo mission.

Too Late Squared

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So this week at my volunteer job, I learned a new term. It’s a very technical term, according to the top doc. He asked each of us if we had ever heard it used and if we knew what it meant. After much discussion, it was revealed that “TL squared” means too late, and “squared” makes it exponentially too late. So what does that mean?

Even though Multiple Sclerosis varies in severity from patient to patient and no two will experience the same disease course, the one thing that is the same for all of us is that beginning treatment immediately after diagnosis is our best chance of delaying disability, and years of data support that fact. Unfortunately with MS though, there are no guarantees because of its unpredictable nature.

When I was diagnosed in 2003, there only four treatment options, all of which required self-injection. The neurologist explained to me that these medications (commonly called DMTs, or disease modifying treatments) would not help me feel better in the present, but that they would hopefully help to slow disease progression, thus helping preserve my future as best as possible. I was certainly no fan of needles back then (now I’m fine) and learning to self-inject is not something I ever thought I’d have to do. A nurse came to my house and showed me how to mix and prepare the medication, and then she handed me the needle and told me to do it. She patiently waited as I attempted to summon the courage to actually take that needle and inject myself. I can’t tell you how many people I have met through the years, who refused treatment simply because they did not want to take injections. As hard as it was that first day, and as much as I hated having my life revolve around my injections, I had educated myself well, and I knew that it was the only option.

These days, those injectable medications are still used by many, although luckily now there are alternatives, including infusion therapies and even oral medications. Yet I still meet people all the time who either refuse treatment or else are admittedly non-compliant. It was so much easier to be non-complaint when I had to mix and constitute my medication, self-inject, and dispose properly of the needle! Even through all that, I was 100% compliant. I am, after all, a rule girl!

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This medication used to require reconstituting and mixing as part if the preparation process  

In a perfect world, I fully support the idea of treating medical conditions without pharmaceutical intervention, using a more homeopathic and integrative approach. In fact, for the first few years after my diagnosis, I took no medications for symptom management at all. None. I just suffered. Because we live in a very imperfect world, I take what I need in order to help me enjoy today as much as I can while I’m also taking a DMT to help preserve tomorrow. I incorporate clean, healthy eating and exercise into my treatment plan, because they all play equal parts. Without my traditional meds, I’d be suffering unnecessarily, and without the healthy eating and exercise, I wouldn’t feel as strong as I do right now. But for those people out there who think a diet alone can “cure” MS, or that you don’t need a DMT because you are asymptomatic, I urge you to look at the data. And if your neurologist tells you that you don’t need a DMT, please get yourself to a new one as quickly as possible!

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This is a simple comparison of a healthy brain as opposed to a brain with lesions (sclerosis) due to MS  

On my worst days I think about where I might be now if I had not started with a DMT immediately following my diagnosis. I never know what my disease course would have been either way, but if I have a shot of “winning” (in this case, holding off progression of disability), then it’s definitely worth it. In my world, I compare it to buying a Powerball ticket when the jackpot reaches extreme amounts. We buy those tickets because we believe that there is a possibility of winning, which would only change our future for the better, and that’s exactly why I am compliant with my DMT.

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I was sure we had a winner last time! 

Those of us who have MS did not choose this life, but somehow we were chosen to live it. As such, we need to do everything in our power to live it happily, healthily, and for as long as possible. Although the idea of taking a maintenance drug is certainly not appealing, it is our only shot at “winning”. Or else it will likely be TL squared.

SSDI

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This week I am inspired to write about the topic of SSDI (Social Security Disability Insurance), as a fellow MS Warrior and friend rightfully received a favorable determination in his case  after fighting (and being turned down) for several years. Unfortunately, most MSers have similar stories to tell when they apply, and many of them don’t end with “happily ever after”. 

I don’t think it’s news to anyone that our system is broken and requires an overhaul. I am also not naive enough to think that everyone who applies is honestly in need, or that there aren’t dishonest people out there. What I know for sure is that jumping through hoops is required of even the most deserving candidates, and the process is massively stressful from beginning to end. Even after being approved, those fat envelopes that come from the Social Security Administration still make me nervous. 

When I was first home from work for treatment, I intended to take just two weeks of sick leave. As a teacher, I was considered a state worker, which precluded me from being eligible for state disability. Fortunately, as a younger healthier person, I had the foresight to purchase and maintain a private disability plan. It was quite a pricey undertaking that seemed alarmist when I was in my 20’s, especially since I thought I would never actually need it because I was young and healthy. As it turns out, every single dollar that I paid (even when my premium doubled when I turned 40!) was worth it. 

The kicker about SSDI is that you can’t apply if you’re still working… but the whole point is that you can’t afford to not work, which is why you apply. If I did not purchase that disability plan (cursing it for how expensive it was), I never would have been able to pay my bills while going through the grueling process that applying for SSDI can be.  

Up until fairly recently, it was quite seldom that you ever heard of an MS patient being approved for SSDI without having first been denied (usually twice) and ultimately hiring an attorney. It was also common knowledge that the determination of your case really lies solely in the hands of the adjudicator assigned to you. When I began the application process, it was incredibly overwhelming. The paperwork is endless, and I hated thinking that I was expending energy on it if I was just going to be denied in the long run. I expected to be denied, but I wasn’t willing to give them a reason. I included so much detail for every single question, and any time there was space given for “remarks” or otherwise, I used the space. I wrote up the sides of the paper, between the questions, and I even fit two lines of writing in every one blank line provided. in the end I had 26 pages that were jam packed with difficult to read (I’m sure!) but honest responses. 

These packets came in different varieties: some longer, some shorter, some from the national office, some from the local office, and even some for other people to fill out about me. It seemed endless. While all this was happening, I also had to be examined by doctors who specifically work in the capacity of evaluating patients for SSDI. Every time I finished one task, something else was requested of me, or so it seemed. That does not even account for the medical records including office notes, lab results, MRI results, and forms that my doctors were diligently supplying to the SSA. 

Four months after I applied, I was approved. I really thought I was going to be denied, and when I opened that letter, I burst out in tears and fell to my knees. I couldn’t believe that I had defied the odds, and without an attorney even!  Moreover, my approval came before I was even eligible to collect because there is a waiting period of five months from the time you apply until you are able to collect. All of the stress and the emotions that were constantly present as I underwent this process came pouring out in tears as I at on the floor and wept, saying “thank you” out loud over and over, to no one in particular, because I was home alone. 

This is the letter that brought me to my knees and reduced me to tears after "winning" my battle.

This is the letter that brought me to my knees and reduced me to tears after “winning” my battle.

Every single day, I hear stories about MS patients being denied for various reasons, and I wonder what I did differently than they did. I have heard stories of utter despair from people who were not able to work, had no income, lost their homes, yet still were denied. It’s shameful. MS is a brutal chronic and debilitating disease that is, sadly, still poorly understood, even by those charged with evaluating our cases. 

My approval (relatively recently) makes me hopeful that the tide is shifting. I have been hearing more stories of favorable determination lately, and I like to think that at some point, MS patients won’t end up in financial ruin while being denied time and time again. 

It truly does feel like a battle at times, but you just have to keep fighting. Once you win, you get to reclaim your life. There is nothing more empowering than that! 

There is no better way for me to conclude this entry, than with a piece of the conversation I had with that long time friend of mine who was just approved for SSDI after an epic battle:

“I feel like a great weight has been lifted off my shoulders. I’m just trying to manage the anxiety of putting together a new life. Very excited too! I have started to get my appetites back too: Food, dating, friends, destinations, hope…

Appetite for Destination sounds like a killer album. Welcome Out of the Jungle will be the first single.”

You said it, my friend.