multiple sclerosis

What a Difference A(nother) Year Makes

Z. looking ahead, MS, new life, new start , , , , ,

 I realize I could start by apologizing for not writing but who would I be apologizing to? Myself? Maybe? But then I would remind myself that this year has been one of no apologies, and no excuses.

Three years ago, my husband of eleven years was telling me that he had an affair, that he didn’t love me and that he didn’t care to reconcile or even consider our marriage. Two years ago, I was counting every single day -still trying to accept what had happened. One year ago, the stress of all that I had gone through for so long took its toll on me physically and I was diagnosed with Multiple Sclerosis.   August 1 will come again and like cobwebs, his last words still cling to me. Even though M has been gone for almost 3 years, I still feel tangled in his lies. I make no apologies for feeling this way. I own my own inadequacies, I also embrace them. I have been able to move on and move forward and I have new dates that hold special memories for me now.

Over the past year, I have spent more money than I should admit to on concert tickets. After M left, one of the first things I did was go to see Ed Sheeran in concert. In Atlanta. Alone. And it hasn’t stopped since. Just this past year I’ve seen Matisyahu, The Steel Wheels, The Swinging Medallions, Mercy Me, The Air Force’s Airmen of Note, Apollo’s Fire, The Sensational Sounds of Motown w/ Mr. Motown himself, New Kids on the Block – even got to touch Joey McIntyre (squeal), Paula Abdul, Boys II Men, and before the year is over, I’ll see Crowder, Ed Sheeran, see Jonathon Byrd perform at a local coffee shop  and spend Christmas with the Oak Ridge Boys.

I helped pick our city’s best taco. I rode in an Uber that had eyelashes over its headlights. I took time off to attend our local TEDx talks. I enrolled in a leadership course at work, which opened my eyes to my own failings but also to strengths I didn’t realize I possessed. I took computer design courses and I’m embracing my newly created job position.

I still, unapologetically, get monthly massages, regular pedicures, manicures, acupuncture, and reflexology treatments. I remind my co-workers and anyone else that will listen, that self-care is too often neglected and that we all need to be kinder to ourselves. I, the most unlikely person for this task, led a team of 10 for six weeks on a fitness/wellness challenge where we placed #20 out of over 200 teams. I have maintained my plant-based nutrition program with just a couple of days where I could have made better choices, and did so the next time around. I’ve lost 65 pounds, which means that shopping for clothes has been more fun and I’ve got a closet full of new clothes. I met with the neurologist for my twelve month check-up and his comment to me was “If I didn’t know you had MS, I wouldn’t have any clue now” and he is starting to come around to my desire to manage my symptoms with nutrition and self-care even suggesting I look into the new research involving biotin. I went through my storage unit, yes, “the” storage unit. I opened every box and tossed, donated, sold, and sorted everything left from a life that was no longer. And I survived, much better than I expected I would, and it feels good. I still go to “Mental Yoga” and again, I tell everyone I know that we all need professional help sometimes.

I’ve been “published.” A local art council accepted a poem I had written not long after M had passed, and they hung it on the wall for the public to see –I was raw, and exposed, and liberated all at the same time. I joined a newly formed poetry group and am serving as their inaugural president.  I started taking ballroom dance lessons after telling myself that if I’m going to start dating again, I need to know how to dance like a lady and not be “dropping it like it’s hot” anymore. I’ve got to leave a little something for my future husband to look forward to. Yup, that’s a new one too. I’ve decided that there is still so much more within me, so much more love I can share and I do want to get married again. I’m not going to lie; dating is different than when I was last out there. But I know what I bring to the table, I’m not afraid to be by myself and if a guy can keep up with all that I’ve got going on, I hope he introduces himself.

I’ve also attended too many memorials and funerals and have said goodbye to friends who left this earth way too soon. And I’ve said goodbye to a couple of friendships. Life isn’t fair, period.

But I will rise up each morning because although life isn’t fair, the fight within me is far from gone. I’ve learned that to heal your body, you have to heal your mind, and to heal your mind, you have to heal your spirit, and to heal your spirit, you need Jesus.  Just because M is gone doesn’t mean he’s not “here.” I accept that he will always be a part of my life, even if it’s just a momentary look back every August 1.

And I know without a doubt that one thing is for certain. I now live in the present, embracing life for what it is at this very second, because I want to live as if this isn’t just a moment, but rather a memory.

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My M.S. Update

Z. looking ahead, MS, multiple sclerosis, new start , , , , , , ,

How are you?  You feeling OK?

I answer these two questions constantly. Most often asked by folks I don’t see on a regular basis. And since my job includes a group of 1,400 people, the rotation of folks that I don’t see on a regular basis, is well, regular.

It’s been awhile since I updated on my health.  I still have MS – it doesn’t go away but my symptoms are manageable. I’m still following a primarily plant-based diet and still practice self-care by speaking life to myself each day, and trying to keep my stress level low(er), as well as doing things that allow “me” time, such as massages and manicures.

I think the biggest thing is that I’m super, almost hyper, sensitive to every nuance in my body and how I feel. I swear that during stressful times I can feel each strand of hair on my head move. I try hard to remember that each day is just a day and that a bad day doesn’t mean a bad life. A bad food decision doesn’t ruin a day; it’s just a bad decision.  The problem with that last one though is that I’ve given myself a lot of grace…and I mean a LOT of grace. I can’t really explain it except to say that maybe I’ve been so successful that I feel like I can’t fail? And that’s a hard mindset (for me) to overcome. Maybe it’s because for the past few years, people allowed me to live by excuses… if I was angry, I had right to be; if I was sad, I had a right to be; if I was snippy or rude, I had a right to be; if I needed a night of binge eating following by laziness, I had a right to be.

The reality is that it’s a privilege to be surrounded by friends that understand that there will be days that I’m still angry, sad, rude or snippy. But they are excuses, and I don’t have the right to keep using what happened to me to still control me and allow me to get away with the lack of common courtesy. It’s the same with MS. Yea, it sucks to think that I have something that will forever be a part of my life. But Lord, help me to remember that it’s a part of my life – it’s not my life.  It’s forever going to guide me, but I don’t want to give it so much control that it leads me.

So, right now, I’m struggling mentally with accepting the limitations of what I should eat. It’s easy to have and experience success short term, like I did from August to December last year. I have medical evidence that the plan I am following does work for me. But now, I’m feeling the weight of having to do this every day for the rest of my life.  I’m not angry that this is my life. I accept the story that is mine knowing that somewhere, somehow there is a plan and a purpose. This body is just a shell – just a physical manifestation of a life that I believe I will have for eternity. And in the end, no matter the emotional, mental, physical struggle that each day brings me I know one thing to be absolutely true….

I may not have signed up for this life but I’m damn sure going to show up for it.

 

Barely Discernable

Z. looking ahead, MS, multiple sclerosis , , ,

2015 was a blur– kind of a going-through-the-motions sort of year, and to be honest, I really don’t remember much. I acknowledged all the appropriate anniversaries and grieved unapologetically. But 2016 had promise and I was able to start seeing light again… until….

Mid-June I lost my taste and my smell, and eventually a whole host of other things that after two MRIs, a spinal tap, and a whole lot of blood work led to a diagnosis of Multiple Sclerosis. A disease in which there is no family history, no obvious reason that made me a candidate for the disease, but nonetheless, I was given the diagnosis.

I found an MS website that indicated that nutrition played a key factor in keeping the symptoms at bay. I started meeting with a nutritionist that I knew from Arizona.  We began by taking out things that are known to cause inflammation in my body. Gradually I reduced from my daily diet things like saturated fat, processed foods, sugar, and dairy.  The goal was to create an environment that would allow my body to heal and recover. I never denied having the disease, but I wanted to do everything I could to be proactive for my own future.

I also started “speaking life” (for lack of a better way to say it) to myself. Each morning I would state the things I was thankful for and I would remind myself of who I am in Christ. I started meeting with a friend through work who teaches balance to aging seniors. Twice a month she would come to my office and we would work on strengthening my balance — little things like shifting my weight to eventually being able to stand on one foot for 10 seconds, then 15 seconds, 30 seconds, then a minute+.

I also faithfully scheduled and kept my monthly massage appointments (I know… so tough!) And I started to really embrace what my pastor’s wife always says, “No thank you is a complete sentence.” I had to take care of me and I couldn’t feel badly about withdrawing from obligations, and not committing to everything that came across my desk.

The end of August, I had my three-month follow up with my neurologist. He wanted me to start taking maintenance drugs. He was not a fan of me following a holistic approach and in no uncertain terms told me that my markers were such that I was going to have another episode from which I would not fully come back from and that each episode would get progressively worse. That I would eventually end up with limited mobility and have a degenerative brain disease such as Alzheimer’s.  I told him that I was not denying that I had the disease but I asked to hold off until December — that if in three months, the then 6-month MRI showed active or additional lesions that I would revisit the drug recommendation. He said, that sounded reasonable and I carried on with my plan of guided self-care.

Fast forward to mid-December, now six months after the initial symptoms. I get both a brain and c-spine MRI and go for some additional blood work. I was no sooner out of the MRI appointment when I get a call from the neurologist’s office letting me know that they had the results and asking to see me the next day. Of course, it’s rarely good news when they call you that quickly and amongst all the emotions, all I could say to myself was “but I feel better.”  I arrived at the office a bundle of nerves. Dr. E asked me if I had seen my report. I said I had not and he gave me a thumbs up and said, “it’s good news.” As he read the report to me, phrases like “improved white matter disease, no new lesions, and my favorite ‘the area of abnormal signal and contract enhancement (etc…yada yada yada) has shown marked improvement, barely discernible at this time'” flooded my heart and I couldn’t help but ask if I could hug him.

So, now two weeks later, I’m set to enter another new year. One that yet again is completely different than anything I’ve experienced before. I’m keeping on with my plan of self-care and nutrition and while the lesions may be barely discernible, that will not be the case with my joy. Bring it on 2017 – your girl is ready for you!