salty

the k-k-key’s in the c-c-conch shell…..

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It’s cold outside! My conch shell is out of place. When my son-in-law found it for me, it was at least 15 feet below the surface of the crystal clear Caribbean sea. I brought it home with me one year, not too long ago, to remind me of my time in the Islands. Here it is on my deck, with a tiny snowman. Looking at it all covered in snow still brings me happiness and peace. One thing is for sure, when I go back to find my little cottage on the beach, there will actually be a key in this conch shell for friends to enter when they come to see me.

On the first day of the new year, I look forward. I hope for a better year. Last year was a very difficult year for many people, me included. I pray for change. New and better. I think it’s a common thread at the beginning of a new year for all of us. Particularly though in my life, and those I love, I hope 2017 brings much happiness and transformation, more than ever before. I can already feel that change is coming. I’m not sure how or when, but a certain gravitational inclination is at work.

So many tragedies and such sadness last year turns my thinking toward much needed optimism, blessedness and bliss. Some of our loved ones are not here any longer, but some of us have had additions to our families. Weddings and babies are especially happy times. I feel privileged to have a son-in-law and new grandchild on the way in June 2017. I’ll be traveling to Tortola, in the BVI for this long-awaited event in the summertime.

(Photo by Necesse Photography) You can see the whole story in photos here.

I also feel very blessed to have lost just over 70 pounds since July 2016 – gone forever. I have 40 pounds to go and look forward to being back to my “normal” self. I haven’t taken any photos yet as I still have the mind set of being too heavy. It’s one thing to lose the weight physically; but perhaps most difficult, you have to lose it mentally too. After 6 children (more than 20 years ago), I decided to have weight loss surgery. I am SO happy I did it. Not one regret, other than I wish I had done it sooner. This year is going to focus on all things I am happy about.

I have particularly enjoyed my time at home over the last week. For those of us who have to work for a living, its nice to de-stress a little around this time of year. It’s cold outside, warm inside, and just resting with a good book or watching a movie seems like a good thing to do. The holidays are over and we can all focus on the new year and what it means for each of us.

In this new year, I hope to see my daughter who lives in San Diego more often. I know I’ll travel to the Virgin Islands, which is my happy place. I hope all my children will make the same trip to see their new little niece or nephew in June, and experience the waves, sun and fun of this special place.

I’m going to try to visualize the positive and actually go there in my mind to maximize my chances of having an amazing new year. Every year I have hoped to lose weight. Well I’ve finally achieved that goal and its gone forever. Its time to move on, so to speak. I am also consciously going to try to be happier, I’m going to look for the good in every situation. I am going to let go of all the things I cannot control. Believe me, this is a HUGE undertaking in my life. As a mom, its natural to try to fix everyone. Not anymore. I’m going to focus on my health and doing positive things to reduce stress in my life. This will in turn hopefully reduce the symptoms of MS.

I am also going to let go of the occasional sadness felt living in an empty nest. It’s a good thing, and it’s time to let it BE a good thing. I have never focused on me and my own happiness. My kids have always come first, as they should have back then. That’s what it means to be a mom.

This year I am going to take a deep breath, breathe in and out, and I am going to love every minute of this new year whether I like it or not! After all, I am blessed beyond belief with amazing children and family, a great work life, a cozy roof over my head, a car to drive, the opportunity to go to the Virgin Islands every year where I can nourish my salty soul, and look forward to another trip around the sun!

ripples and pebbles

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People like me, those of us who tote around a diagnosis of MS, will at times appear like you. I’ve heard it said that we resilient souls who have MS are like snowflakes, no two are ever the same.

That may be true but we all understand similar symptoms can sometimes mean the same thing. Its very hard to put into words. Most of us can understand a smooth surface, like a body of water without even the slightest ripple. It’s the beautiful epitome of quiescence. There are moments in all our lives that are frozen in time, a moment where you feel…… well, you feel perfect. But even pebbles can cause ripples in our souls and our lives.

The smooth surface of water, seeing it or languishing in it, creates for me a feeling I’d like to wrap around me as a cloak when I have exacerbations. Sometimes I have to go into my mind to accomplish it. The Ocean, even with waves, is my happy place. I am a Salty Soul at heart. When someone throws a pebble into the water, it sends little waves out in all directions. You just never know how big the ripples will become. Could be nothing at all, a normal symptom such as increased pain and numbness OR it could be more significant. Sometimes I feel someone has tossed in a boulder.

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That’s how it feels to have an MS exacerbation. It’s a giant game of Clue trying to figure out what caused the symptoms to worsen, how to make them better, and if they will ever go away at least for awhile. I find that when I have no stress, my symptoms are miraculously wonderful. Even I sometimes forget I have MS when I’m in my happy spot.

Now some people progressively get worse, this we know is called Primary Progressive Multiple Sclerosis. I fortunately don’t have this kind, mine is Relapsing/Remitting; meaning that I’m fine for awhile, but then it seems I have a worsening of symptoms. I sometimes wonder if I have progressed to Secondary Progressive Multiple Sclerosis. It kind of sucks either way to be honest.

I was doing well for about a year. But within the last two weeks, I started developing weakness on the right side of my body and began falling to the right when I least expected it. I started falling into walls and tripping over things like my feet, chairs, floors, etc. Even my right heel on my tennis shoe showed more wear. This may be the worst exacerbation I’ve had in years. I try not to tell people what’s going on, because I don’t like to complain.

I have an invisible disease, and if you didn’t know me well, you would not even guess I have MS. That’s good I guess, but sometimes people just don’t understand. They forget you have a disease. You don’t want to talk about it. You work on the premise nothing has happened. Inside though, the idea of these worsening symptoms race around in your brain and you pray they don’t get worse. Your colleagues and friends have sustained expectations that you aren’t even sure you could accomplish if you didn’t have MS.

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So it is, I am having my second of 3 infusions today. One thousand mg of IV Prednisone (solumedrol). It takes an hour to infuse three days in a row. By tomorrow I’ll be crawling out of my skin. I’ll probably be early to work after I make a new dust ruffle for the bed, weave new area rugs for the kitchen, clean the bathrooms, give the dog a bath and maybe the cats, limb up some cedar trees in the yard, wash my car in the rain, and vacuum it out too! Yuck.

For those who don’t understand MS, I’m seriously happy for you. For those who have friends or loved ones with MS, don’t worry, we’ll be okay! It seems to help to write about it and vent, per se. You can’t understand how we feel and that’s okay. It is nice when someone asks how you’re doing, just occasionally. You can’t know what the symptom of fatigue really is with this disease unless you have it. Urinary symptoms, visual symptoms, muscle weakness, pain, numbness, tingling and I could go on and on. It’s different for everyone and therefore a generalization is not possible. Fatigue is my worst enemy. There are no words.

I do find it comforting to talk with other people who have MS, compare notes, see what helps them and what doesn’t, talk about new medications and ones we have failed. If you have MS and you are reading this, please feel free to email me, I love feedback!

We can’t always have what we want in our lives, but I am blessed with so much, and I’m not bitter about this ripple on the water. At least I’m alive. I know my kids love me and still need me. Hopefully I’ll be here on this planet for a long time, I have so many plans and dreams left to pursue. I’m trying to find a way to live on a sailboat in the Virgin Islands, my happy spot. Until then, it’s life as usual. This too shall pass.

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