dreams

Here’s to You….

This post is a salute to everyone who has ever touched my life. I appreciate and applaud your friendship, love, comfort, guidance, wisdom and support. After all, where would I be without you? As “they” say, “it takes a village.” Surely, it’s taken an entire nation to get me here. I am blessed.

I was not the easiest child, I can positively say. Since my mom’s passing in July this year, many things have come to an acute point of conversion. I sometimes wish I could be little again, knowing what I know now, and appreciate my mom more than I did. Impossible. Yes. But “they” say, “hind sight is 20/20.” So very true.  The question, ‘If you could do it all over again, would you do it differently?’ First of all, most of us wouldn’t go back for anything, but if I could appreciate my parents more back then, I would do that. I would also appreciate and spend more time with my grandparents, my aunts and uncles and cousins to be sure. I have an amazing family.

I remember growing up, looking everywhere for acceptance, from the time I was young but especially in Jr. high and high school. I have never confided that to anyone. There were cliques and crowds, most of which I didn’t seem to fit into. The struggle and desire to be simply ‘liked,’ was real. If I could go back, I’d pay more attention to school and worry less about what everyone else thought of me. In 100 years, no one will remember. Mom said that all the time. I appreciate now, her words of wisdom then. Salutations to all those who befriended me back then. You truly meant the world to me and still do today. My true friends, you know who you are, thank you.

Thank you to my children, without whom I wouldn’t have excelled in patience and compassion. You are all the reason I was born, I’m positive. It was hard; there were times I wasn’t so sure we would make it, but we’ve all come out on the other side. Adults now, I pray your dreams and aspirations come true. I wish you kindness, wonder, and humility.  And, for Heaven’s sake, live like there’s no tomorrow because we don’t know if there will be.

My sisters deserve my utmost respect. They become your best buddies somehow even when you used to think they were just a pain in the butt. When you’re the eldest, they are more like shadows that never go away. Then, when you are mature enough to appreciate ‘sisters’, you’re grateful you have them. They now are “qualified” to know my secrets and dreams like I never trusted them before, seriously, not on your life. I never had a big brother (secretly wished for one every night), but my cousin filled the bill for me. I appreciate and love him like a brother as much today as I did when we were little. I wanted to be like him, blow up tiny anthills with firecrackers like him, ride a motorcycle like him and make a ‘machine-gun sound’ with my voice like him. Sadly, I’ve only ridden a motorcycle (my own Sportster), but not like him. He rides with the wind, on a mission I don’t fully understand. Here’s to the war-hero Veteran I knew he’d always be.

And finally a toast to my husband for always putting up with me and giving me the most beautiful life a person could want. I don’t know where I’d be if he hadn’t come along. “They”say, ‘everything happens for a reason.’ For me to be sitting here writing this, I have him to thank. Living on a little lake, understanding my need to be in the Virgin Islands and sending me twice a year sometimes, doing the best he could with the kids I already had, giving more than he asks for in return and even buying me a little crown (haha), loving me through my multiple sclerosis and never complaining; I couldn’t ask for more. I’m 54 and finally got my crown!

In this month, the first Thanksgiving without my mom, my children scattered across the globe, and me here in the Northwest in the freezing cold, I’m thankful for so many things and am blessed in ways I never dreamed possible. I wish all of you a bountiful Holiday with all the love and happiness you can handle.

Always, All My Love….

ripples and pebbles

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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