multiple sclerosis

From Pinterest to Promise

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

Recently I was approached by the group facilitator of our church’s Divorce Care support group. She asked me to speak about some of the proactive steps I had taken over the years.  It’s hard to believe three years ago I went to my first Divorce Care meeting and once it was over I promptly handed back the workbook and told the facilitator that this wasn’t for me, that I wasn’t ready.  Five months or so later, I went again and it was the start of exactly what I needed for my recovery.  Being in a community of folks that had gone or were going through what I was going through helped. I firmly believe we are not meant to do life alone. The notion of self-reliance and self-sufficiency is so misconstrued and misinterpreted. We need each other.

With the group, I shared that one of the things I did during the craziness was to spend time searching through Pinterest.  My sole (soul) purpose was searching for words of encouragement, something in which I could believe.  I found some good ones – some that I still to this day recall and either sigh or smile when I read them. However, it struck me that while these words of encouragement existed, they weren’t alive.  I don’t know that I can pinpoint exactly when I started to seek out the promises of God in my Bible but I know that as I searched for words of encouragement I found them. Eventually, I compiled a handful and I  would stand in front of my bathroom mirror and say, “Cast all your cares upon the Lord for He cares for you (Psalm 55:22). You are clothed with strength and dignity and laugh without fear of the future (Proverbs 31:25). That the Lord is your shepherd; you shall not want (Psalm 23:1).” After awhile, I began to internalize them and began to really believe them. “Cast all my cares upon God, for He cares for me. I am clothed with strength and dignity and I laugh without fear of my future. The Lord is my shepherd, I shall not want.”  Most recently, I used these promises to remind myself that He knows the plans He has for me (Jeremiah 29:11). So while the diagnosis of MS (let’s be real and include everything: foreclosure, bankruptcy, losing everything in Arizona, infidelity, divorce, suicide, and sickness) took me by surprise, it didn’t catch my God off guard.

Today, I got an email letting me know that a woman I fully respect and honor has received a diagnosis of cancer.  I don’t love hearing this – in fact, I hate hearing this. But C is a remarkable woman who finds peace in the midst of every situation because she is confident that God was not surprised by the phone call she received.  C doesn’t need Pinterest to carry her through this next stage in her life, but some of us that love her might – I still struggle this side of life in understanding why we are asked to walk the path we are given.  Have I gone through my own health battles to remind her and others that there is hope? Am I here to remind her that it never occurs to any of us that one day we’d wake up sick and never get better? Will I still turn to Pinterest to find words of encouragement to grace the cards I will send reminding her that she is loved?   Probably.

But I will also search for promises in my Bible because I know that is the life that is needed right now.  And I am reminded that it’s my responsibility in this “tribe” of life that I am meant to offer encouragement, and support, and to not let her feel like she needs to be anything other than selfish about her own self-care right now.  Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God (2Corinthians 1:3-4).

So to C, and CM, and AS: I’m rooting for each of you and the challenges that life has brought to your doorstep. You’re not alone.

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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!