from somewhere south: positive vibration

One of the most beautiful places on our planet, collectively, are the British Virgin Islands. While I hate to admit this outright, (too many people come here already), it warrants mention. This place gives my soul peace. These islands host a positive reverberation which heals my soul from the fast paced, crazy world we live in. This vibration is restorative, happy, soulful. It may be the sun, the sand, the sea air, and quite possibly all of these things. I can’t be sure. I just know the vibe is of peace and that I am lucky enough to absorb a little from time to time.

I recently stopped working. This was a difficult decision, in that my work family was (is) one in a million, so to speak. Multiple sclerosis played a gigantic role. I don’t like to give power to it by acknowledging that it’s getting worse, but in reality, some aspects of this disease are definitely getting worse; causing problems for me where problems did not exist before. Five years ago I loved going to work, in fact it was a way to “get away” from stress going on at home. Somehow in the last couple years, the stress seems to be reversed. I long to be in the islands for the mere serenity much more so than I ever did before.

Josiah’s Beach

I can’t put into words the feeling. The symptoms of this disease HAVE become worse though, with the kind of ferocity someone with MS doesn’t like to discuss. I have to put myself before anything else right now, and that is something I have NEVER done. With nothing to do on the day above, but sit on the beach and watch the waves and the surfers, I did exactly that, somewhere south. I like the ambiguity of that. I like how I felt that day and what I didn’t feel.

Of course we all have to work. We work until the government says we don’t have to anymore, until we get Social Security. We work every day until we can stop. No one ever said on his deathbed, “Damn, I wish I had worked just one more day.” I have worked all I can. My feet are now numb, and I have a very difficult time walking. My arms and hands are numb, so symmetrically in fact, I find it hard to remember what it felt like to ‘feel.’ Word finding is difficult when in the midst of a conversation, and remembering simple directions causes stress and anxiety. Fatigue is generally what commences when I wake up in the morning, and it gets more intense as the day wanes. It’s definitely painful to admit this to myself, let alone anyone reading this.

I do miss the girls at Madrona Dermatology and am grateful for the opportunity I was given to be a part of such an amazing team. My love to Sarah Dick, MD, without whom I wouldn’t be who I am today. Sarah, you inspired me to be better and love more. You are truly an angel in disguise. I thank you for everything you have done for me! My dear dermatology friends who will always be in my heart. I love you all.

I am not sure how this whole “not working” thing will ‘work’ out, but I have to try to help myself not get any worse. MS is not a death sentence but it is very difficult to live with. Surviving as well as I have for as long as I have is incredible to me; I don’t feel great but it could be worse. By making peace and happiness a priority, hopefully there won’t be as much stress, as many exacerbations, or progression of this disease. I strive to be positive in my daily endeavors and know I could not be where I am if it weren’t for the love and support of my husband. I am blessed beyond words – even with MS.

buoyant, beautiful and brave….

When I think of my happy place, all is well within. Who wouldn’t be happy here? My life is changing; there seems to be a diacritical mark coming. After all, life is about change, right? I don’t feel brave, that’s for sure, but I feel my life is about to become buoyant and beautiful!

I do feel that positive thinking with a “lady-luck attitude” definitely could maximize my chances of obtaining this and so much  more. This particular picture, this particular place means so much to me. Prevailing as the one place that brings me total peace, this place – White Bay, Jost Van Dyke, in the BVI’s – is the essence of happiness for me. Circa 2008. Not too many boats in the anchorage then, this was before it became so well known. Swimming in this sea, here, generates a simple interconnection with everything for me. One word? Soulful.

Nowadays there are swarms of people who flock here for the rum drinks called ‘painkillers.’ I wish they didn’t. My MS symptoms tend to dissipate down here. I’m not sure why, but there is no question that stress does not hamper me here. Yes, my life is changing. I have been persuaded to take some time off work, to take care of me. Luckily my husband supports this wholeheartedly or I wouldn’t have a chance to de-stress at all.

I have had some worsening on my T-spine MRI, causing more numbness in my feet and legs. Many things can cause worsening, but stress is one of my biggest issues.  So, once again, I’m headed back to these most amazing islands in the coming weeks. I am sincerely grateful to my work family who also support my health and wellness. I am truly blessed to have had a home like Madrona Dermatology.

This falls in line with trying to take care of myself and not stay wrapped up in the chaos that surrounds me at times. Life persists and at times is hard for everyone. I’m one of those people who may have too much empathy. Is that possible? I can literally feel on many levels what others are going through. Guilt is sometimes an overwhelming emotion when I can’t solve or fix a problem, whether it belongs to me or someone else. I am also someone who can’t say ‘no.’ You want me to jump off a cliff for you without a parachute? “Yup, I’m your gal!” Maybe this evolved from having so many children or maybe its just me.

Understandably, all mothers have an inherent need to take care of others. At least most mothers do. When your kids are in turmoil, then your heart feels agitated, turbid, a mini eddy in your chest. Believe me, it was so much easier when they were little.

We all need to have a sense of self-control, duty, loyalty and elite belonging. This was explained to me one day, and I wholeheartedly agree, by a family member who valiantly cloaks himself in each of these along with brotherhood and commitment. My goal is to reach out and obtain a few of those traits this year, as I suppose I am lacking. I believe if our children, especially our boys, could come to engage themselves in actions such as these, many dreams would come to fruition. They are simple words with intense meaning when grouped together.

Letting go of what I can’t control is perhaps the hardest task at hand. There are so many good things happening around me. There are grand-babies expected, dreams waiting to become reality, and adult children trying to do the best they can in their lives, while learning from mistakes. I’m grateful for everything I have and positivity is the the pathway I seek. Visualizing what I want in my mind’s eye is something I do every morning before I get out of bed. Focusing my energy on good is much better than drowning in bad.

From my bedroom, I can see the conch shell I brought home from the British Virgin Islands, on the railing of my deck just before I go to sleep. I look at it and remember how we found it, and how my son-in-law cleaned it out. The colors inside are my favorite ones. It’s really an amazing piece of the islands, even as it sits in the freezing cold on our deck overlooking Panther Lake in the Pacific Northwest. I bet it never imagined living here! I really am blessed.

I’ve read that in Chinese Buddhism, a conch shell signifies a prosperous journey; the spiral formation inside the conch is a symbol of infinity, of victory over suffering. Now whether that is true or not, I don’t know, but it sure is a nice thought.

I hope for a prosperous journey in the next few weeks to see my daughter and son-in-law; and of course her growing bump that is my first grandson. I’m excited to post more pictures soon, but I also wish my sister, Kirsten, could accompany me on one of these trips. If anyone deserves some ‘me-time’, its her!

White Bay 2008

My dream is to have all my children here someday. Way back in 2008, when I first visited the British Virgin Islands, that was all I could think of. I talked about it daily when I returned home to Seattle. Everyone said it looked beautiful. My eldest daughter, Jody, was the first to come here and I was ecstatic; then my mom. I’d love for my sisters to see it as well. On the east coast, this is where people vacation. On the west coast, it is Hawaii.

I’m fortunate in that I’ve traveled to both and they are lovely, but I’m smitten with the Virgins. In 6th grade, my best friend, Kay Adams, used to tell me stories of living on St. Croix, riding her little bay mare, Lady Bug, on the beaches and over the hills. I knew someday when I grew up, I would come here. I just didn’t know how much peace I’d find or that I would need it so much in my soul.

Stay tuned, I’ll be posting more pictures when I go back! I hope you can to see how beautiful the Virgin Islands are. My hope and my prayer is that wherever you feel at peace, wherever your happy place is, that you get to enjoy it this year for as long as possible. My daughter, Annie, reminds me to, “Always remember the dream.” I love you Annie girl, my little Cancer. This place is waiting for you to explore. I know it will be in your soul as it is in mine.

Never forgotten, thanks to my friend Kay, and wish I knew where she was today <3

waves of change, oceans of opportunity….

The ocean is truly a soulful matter to me. The sound of the waves lapping at a boat hull, or rolling up onto the shore is tranquil in and of itself. Metaphorically, waves of emotion, often have the power to tear apart our lives when least expected. Change can seem inflexible and unyielding. Oftentimes, there is opportunity in the vortex that seems to envelope our lives, but it can be difficult to recognize, especially if drowning.

I am speaking of the epidemic of drugs, alcohol and addiction in those we love. Everyone is touched somehow, some way by this nefarious beast. It has many heads and tells many slanderous tales. It takes our loved ones from us. Make no mistake, the game is not one regarding captivity. The final goal is annihilation. I speak from past experience, having seen a family member taken because of addiction. I also have friends who have survived a loved one being taken from them.

Grievously, we have all been touched by friends or loved ones who are addicts or who’ve overdosed. You can see it all over Facebook and social media. There are SO MANY parents who have no idea what to do to help their addicted child, me included. This is something no one wants to talk about. It’s embarrassing if it’s your child, it’s a giant secret in even the best families. One of the reasons for this couldn’t be more disgusting.

These 20-something and younger kids either have no insurance, can’t get insurance because it is too expensive or their parents can’t afford to buy insurance for their families. In the State of Washington, you can get Medicaid, but truthfully, most clinics and private doctors don’t accept it. Going by different names, such as Apple Health, in reality it’s just Medicaid; an umbrella term or “brand name” for all Washington State medical assistance programs. If you weren’t a patient previous to the time you obtained Apple Health, most clinics will not accept you as a patient.

I have worked in the medical field for many years and KNOW this to be true. Sure you can go to a community health care clinic miles from where you live and be seen by a different provider each time, but you can’t get the care you deserve from names you know and trust. If you have no insurance, and your child needs help, you’re left with a whole lot of nothing. Meanwhile, your kid is on the streets, you try desperately to find a place for help, but there are “no beds available.” It’s on a first-come-first-served basis. People wait weeks, all the while using the whole time, being strung out, trying to just survive till tomorrow. None of them find peace. In reality, these places who take someone in for detox, actually have more dealers outside their doors than anywhere else. When the addict leaves, supposedly “detoxed,” all they have to do is step outside where there is a dealer just waiting to supply them with the next hit. I know I do not have the resources to send my kid to Arizona or some serene beach facility somewhere.

I firmly believe that if there was more help in the form of good drug programs and treatment centers who care, many addicts would be alive today. Shame on the big clinics and organizations who are able to provide help but decline because they won’t get paid enough. Is a life worth that exta $500 bucks for one visit? They end up in an ER, treated with Narcan and then released. Tell me how that helps? Remarks on FB or in the news saying, “they’re just drug addicts, who cares if they die,” or “they’re better off dead and not on the street,” infuriate me. If that addict was your sister, brother, mom, or dad would you say the same thing? Do you support those who deal with addiction, not because they want to, but because there is no choice? Just tell them you care, it’s the biggest step of all.

We all need to become more aware and care. Our children are using drugs for a variety of reasons, but all it takes is one time, and then they are hooked. They steal, cheat and lie to get the next fix. One day you wake up and you don’t even recognize your own kid. I would urge you to consider this fact: You are not immune to drugs. Kids from rich families, poor families, good families, Christian families, athletic families and even families who swear, “that won’t happen to my kid,” have horror stories to tell us if we listen.

Addiction does and can happen to anyone. If helping someone survive means we need to stop enabling them, then we need to. It doesn’t mean we need to hold a grudge against the addict. They are being held in a hell worse than we can imagine. Your grudge doesn’t hurt the addict, it only hurts you. Telling someone you love and believe in them makes more sense.

I do not know what the answer is, I just know I have to fight. The drugs are winning right now, our children are dying. I want the very best for all of my children, as any parent does. Sometimes it isn’t all wrapped up in a perfect little package and I’m not afraid to say that my family is no exception. I work on it every day in my own way and in my own heart. I dream of change and have faith it’s coming. For the first time in my life, I’m thinking about me first, which is a very difficult thing to do when you have 6 adult kids and you’ve never done it before. I’m digressing a bit, but I think I need to be at peace with myself to be able to help others. It doesn’t mean I don’t cry or stress out because of addiction in my family. It just means I’m trying my best to make it through, as that is the only way out.

We are all waves of one sea. We need to start behaving that way.

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

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!

peace is my priority

Mixed feelings come at this time of year. The Holidays. It’s beautiful, joyful, exciting and peaceful. It’s also difficult, sad, stressful and lonely depending on who you are and how you are. I celebrate Christmas, as does my family. I’ve always found it a difficult time of year since I began “adulting.” Financially stressful, especially. I’ve never had ‘lots’ of money in my adult life and I think that definitely makes a difference.

Money doesn’t solve all your problems. For instance, it can’t buy happiness, but it sure does help a lot.

We should know the holidays are not about money or gifts. The reason for the season, the birth of Jesus Christ, is what we need to remember. Now, I don’t want to get into religious debates with anyone, but I do feel a definite holiness about this time of year. I love Christmas and the memories I have as a child. I hope my children have some happy childhood holiday memories too. We didn’t always have a lot but we had each other. Nowadays, my nest is empty, and its especially hard when my babies are adulting themselves.

Peace is most apropos at this time of year. I feel a necessity to find peace in my life during the holidays. I miss the younger years with my children, wishing I could have a do-over of just one Christmas eve. I smile and think about those times and reminisce about the joy of Christmas morning. Living in Seattle, we don’t get much snow, but there were a few years Seattle saw a white Christmas.

Remembering the things I am thankful for gives me peace. My family, my cozy home, my work family and friends, my pets and knowing that I am fortunate enough to go to my happy place at least once every year in the British Virgin Islands. In concentrating on peace and solace this year, I find I am less stressed than any other year before. I’m positively unsure how this works, but for some reason it does.

For some of us, loved ones have passed on and we miss them most during the holiday season. And, for some, there are new babies to bring joy to our lives, whether as grandchildren, nieces, nephews, or our own children.

Some enjoy baking during the holidays, cooking big meals for our families, wrapping gifts, going to church, and just having everyone under the same roof. I think being surrounded by the ones we love is extra special. Of course sometimes our families are spread all over the planet, in far away places, or unfriendly lands fighting for our country. All of us are so different, yet we all want to belong and yearn to be part of something bigger. Thinking of that, remembering my blessings, brings me peace.

Then I watch my husband shovel snow for me at 6 a.m. so I can get down the driveway to get to work without ending up in the lake, and I truly feel grateful. (In Seattle, this is a blizzard)!

Peace. It’s one of those words that means different things to different people. In the world we live in, I’m fortunate. Blessed. My wish for anyone reading this, is that you find some sort of peace this year. Recognize the people who do nice things for you or simply smile at you. Take note of how fortunate you are to just be alive. We are all exactly where we are supposed to be. I guess we can find peace in that fact alone.

My soul is peaceful this year, it’s a priority.

i’ve learned I can keep going long after I think I can’t….

I’m pretty confident I didn’t sign up for MS. I didn’t take a number and stand in line to obtain a short fuse, memory problems, sensory overload, fatigue, numbness or pain. Yet, I’m the infamous owner of all and more. Sometimes I feel like the quondam image of me was long ago obliterated. I’d love it if someone could toss me a magical life ring. If I could just reach it, all these symptoms would be gone; but it’s just out of my grasp.

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I am paddling toward the horizon but I never reach my goal. Every day is comparable to that. Some days are good, and some days are better; but then some days are just too much. I keep paddling through troubled waters littered with stress and anxiety, unanswered questions, heartaches and trying to explain symptoms for which words don’t exist.

When you have an invisible illness, there is a certain pain associated with not looking sick. Included are physical symptoms that you learn not to advertise. There are times when you feel really good…..so good – you absolutely overextend yourself. The next day you’re wiped out, literally. The life ring would come in handy about then. Still you keep going. I’m not sure how you persevere but you do. The way you feel is definitely inexplicable.

I was diagnosed with MS almost 20 years ago. Looking back, I wonder how I could have possibly come as far as I have. How was I a single mom all that time? I’m sure I did an acceptable job as a mom, but I wonder if it would have been different had I not been diagnosed with MS. Certainly all of us have wondered “what if?” at times for all sorts of reasons.

Then again, I feel extremely fortunate that I’m simply alive. I’m not sure what my point is, but I do know I have to keep going. As they say, “only the broken wave can know the ocean.”

ocean-wild

You really can’t make this stuff up. I truly believe that. Some days your biggest supporter is your pet. Your greatest advocate, though, can be you. Difficult days can drain you, sometimes you feel unreliable, confused and just plain useless. It usually takes me the whole weekend to become whole again after a long week. And, stress can destroy you. Any stress.

I have a difficult time explaining that to anyone. Stress can drain anyone, but when you have MS, symptoms are magnified by a trillion. One would have to really sit and think about that to understand what I mean.

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More than anything, I know that when you keep going good things happen too. If the goal was more difficult to obtain, the reward then is sweeter than you can imagine. Even though some days I can’t see the forest for the trees, I know there is a beach somewhere waiting for me to be on it.

In the mean time, I keep dreaming, believing, hoping and surviving. I keep going, long after I think I can’t.

seahorse-jpg

lines in the sand

In 1990, President George H. W. Bush described the initiation of the Gulf War as drawing “a line in the sand.”

Lines in the sand. We make them every day, for almost any situation. Sometimes we don’t realize we’ve created a line. Possibly, even frequently, we wish we had…. or we hadn’t, drawn that fated line….

The thing is, even if you’ve drawn the stupid thing, you can NEVER go back and erase it. You can’t stomp it out, use a twig to write “I love you,” instead. It will always be a line in the sand. Something on which you refuse to compromise.

The proverbial line in the sand is said to be, “the point beyond which one will proceed no further.” Similarly, a secondary meaning, “a point beyond which, once the decision to go beyond is made, the decision and its resulting consequences are permanently decided and irreversible.” Wikipedia.

I think this second meaning is more of the working definition I’m speaking of, the speculation that you can never go back.

crossing-the-line

Sometimes as parents, we draw a line in the sand for our children. Then the child crosses that line. Now what? You can’t go back and think to yourself, “did I really mean it?”

I know I crossed every line my parents drew, and my mom was considered an artist. I did it without even really bothering to think. If they said ‘No,’ well, then I was determined to hurtle that line. Looking back I don’t think it was such a great thing, just more of a challenge at that time. I’m not going to lie, I was a triple threat when it came to crossing lines (I was also considered an artist, adored calligraphy), which of course does not make it okay. I’m an adult now. I realize my mistakes, right?

The trouble is, that sand is full of watercolor emotions. Love, anger, relentless anxiety, that punch-in-the-stomach kind of pain, and forgiveness too. Anything you can feel, that sand represents. Draw a line in it, and all bets are off. Sand feels like a precarious balance between the conscious and the unconscious; what you want and what you think you want. Physically it squishes through your toes and runs like water through your fingers. Try to hold a wave on the sand. It won’t ever happen.

I feel having children is kind of like sand. You can build a sandcastle and it lasts for a little while but never forever. Kids never stay the same, even though we try to make them. Choices. Eventually they make them. You draw a line in the sand and dare them to cross it. When they do, you can never go back or change your mind. You have to remain strong and resilient like the waves that keep returning to the sand. Parents everywhere hope they make the correct choices.

Just so kids know, there was no instructional manual when it came to raising you. We did the best we could with what we had in our tool chest. I think all parents say that at some point to their kids but it’s so true. Staying the course, making a stand and continuity are the most difficult choices I have ever made. I hope and pray my kids will all be okay, God knows I do.

Sometimes I wish I could shake them and say, “Wake up! Listen to me! You need to hear what I have to say!” All any parent can really do is hope they heard you the first time. We don’t say these things for our health! (I’ve heard my mom say that at least 10,000 times). I heard you Mom. I hear you now. Is it so wrong to just want everything to be okay for your sweet babies? I think not.

I just wish there really was an Owner’s Manual for having a kid. It would certainly list the high alarm rate, the specific safety hazards and unfamiliar features which accompany said kid. It would definitely tell you about any technological advances a future kid could inherently have, basic operating instructions and any peripherals included with your kid, but most helpful would be the step-by-step EZ method of deactivating said kid until trouble has passed.

We parents would be much better off.

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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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enough is never enough

I experienced a very emotional day today. As if the rain was not enough, I went to the memorial of a woman I never met. She passed away on her 50th birthday from brain cancer (glioblastoma). She was an amazing woman, as I read daily on Face Book, an accounting by her husband (my ex brother-in-law ~ but in my heart he always will be just that). He told the story of of how she lived, which hit me like the proverbial ‘ton of bricks,’ and how he remembered his last moments with her. I shed tears openly for him, my nephew, and her teenage son.

I found that I also cried for MY son, life lessons, and the insanity that sorrow embeds in your soul.

My son is entangled in the conflict of his life, a contest of good versus evil. A potion of drugs continues to lacerate him from the person he used to be and the addict he has become. As I listened to the pastor, the prayers and the echo of falling teardrops all around me today, I wept too for the boy I raised. When you imagine a shameful family secret called drug addiction, you never imagine it will be a story about you and your child. It never occurred to me that my child could or would be an addict.

With too many young people succumbing to drugs like Oxycontin and heroin, to name only two, I KNOW I am not alone. I feel alone though. I haven’t seen my son in months. I don’t know where he is or how he is living. I do know he is using and I am panic-stricken that he is in the clutches of the most nefarious monster known to any parent. There are too many I know who have lost their children to this monster, the little boys and girls our minds still depict them as.

I am afraid of this outcome for my own son. I struggle to understand addiction and what it means.

As I contemplate the life of a very brave woman, who fought her cancer until the end, I wonder why? Why do some have to leave and others don’t? No one seems to have a reasonable choice or a good reason. She is missed tonight by so many and the sorrow of that is overwhelming. I’m especially heartbroken for her son.

To the ones who leave and don’t want to, who fight till the end; and to the ones who are trying to wipe out the pain with whatever poison or process they can – I don’t think we will ever understand what they are going through. If they could interpret or somehow define for us the agony of their sickness or struggle, perhaps we would be able to grasp a small piece of understanding. I know I’m praying for understanding.

In the same breath, how can we clarify the loss we feel when they are gone or when someone you love is bent on self-destruction? If we could only explain to THEM how much they mean to us, if they could only know in their heart of hearts the love we have in ours, would it make it all different?

My son is not gone, he is alive at least, and I am blessed to have that. I miss and love him more than he will ever know (all my texts go unanswered). A woman I never met is now in Heaven, with the brightest light enveloping her, warming her soul and she knows no pain. When is enough ever enough? The time we spend with our loved ones here on Earth will never be enough, we can never give enough love to our children, and we can never understand enough to make the pain go away before it is irreversible. Are we supposed to want less? Is that enough?

My heart breaks for those we have lost and those who are lost.

I’m just a mom and its all I know how to do.

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goals and gifts

I’ve heard it said that the secret to happiness and success in your life is that ‘your goals must match your gifts.’  Actually, my cousin, a retired Green Beret, said this to me. His goals definitely match his gifts.

When you think about it, it makes perfect sense. If your goal is to be a prima ballerina, you’re a little overweight, think you’re a great dancer, and you can even point your toe shoes with the best of ’em; your chances of fitting into that tutu and living that ethereal moment on stage with The Pacific NW Ballet is most likely not going to happen. It doesn’t matter if the tights make you look great! It just isn’t very likely, right? If this is you, look for something you love that matches your gifts.

I think part of the goal is to find your TRUE gift. I’m convinced we all have at least one gift, if not a few. Some people find their gift early in life like Olympic gymnasts or swimmers. They know right away, hey, this is easy!  If your goals are not realistic and don’t accentuate your given talents, it just isn’t going to happen for you; no matter how much you think it should.

We need to be realistic in our lives. For instance, “I KNOW” I can’t sing for the life of me.  I am never going to cut an album with P!NK or even sing in a crowded bar because it would be disastrous.  First of all, no one wants that kind of noise grating on their eardrums. Second of all, I am completely aware that I a not a good singer. Singing is not one of my gifts.  I may be artistic, love to draw and paint, even love writing. Are they my best gifts? I’m not so sure yet.

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So how do you decide?  How do you figure out what your gift is, which in turn could indicate your goal? How do you find peace with happiness? As my retired Green Beret cousin said, “Some people just don’t know how to recognize their gifts.” I think when it comes to gifts, you need to pay attention to compliments. If someone told P!NK she was an amazing seamstress (and she may well be for Heaven’s sake), but the blanket she made looked more like a coaster, her seamstress days may be numbered, right? God gave her a voice that is a perfect instrument, a gift!  Goal matches gift? Check!

I’ve not quite identified my own gift. Therefore I’m not sure what my goal in life is. I know I have lots of empathy for my patient’s I see every day. I know I spend quality time talking with some of the older people and really enjoy what they have to say and the stories they weave. I also know I can make them laugh when they may not have been so happy in the first place. It happens every day. I’m a medical assistant today and before that a medical transcriptionist, but I’m not sure I have the correct goal and the best gifts in place. I am going to need to consider this. I do know I NEED to find my goals and gifts to be happy and have peace.

If someone would pay me to paint watercolors on a beach in the Virgin Islands, I would be in Heaven. I haven’t picked up a paintbrush in years though. I’d love to write the great American novel. I have lots of ideas saved on Pinterest but I haven’t acted on anything yet. And I’ve often said if someone would pay me to throw tiny rocks or shells into the sea from my chaise lounge on the beach (with sunscreen on of course), I’d gladly sign a contract! That last was for my dermatologist who knows me well.

   

Sailing. Now there is something that excites me. I can see myself sailing in the waters of the Caribbean, seeing hundreds of islands, stopping to help a stranded boater who needs a tow, exploring the streets of some distant shore – listening to the story of a local character, sharing a smile and laugh. I’ve fantasized about owning a sailboat, living aboard, sharing sunsets with my husband and our kids who would come visit, rocking in a bay while counting stars from the cockpit, falling asleep to the gentle lapping of the waves on the hull. Those are the romantic notions.

I know of course that B-O-A-T stands for Bust Out Another Thousand.

How do I get to the goal of a sailboat? I definitely can’t afford one now. We could sell the house, Harleys, furniture and stuff that we’ve accumulated of course. We would still need to work until we are least 60 though, 8 more years for me. I’m not trying to wish away the years yet! I need to stay young, (which is relative because my kids already categorize me as old).

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My goal is to help others, just as I have been doing but in a different venue. On the sea. I would love to sail to Grenada or Haiti and help people continue to simply live after natural disasters. I’d like to take a child who wouldn’t have the opportunity otherwise, for a sail and give them that feeling you only get from the wind in your hair. Freedom. Its what we all search for in the end.

I’d like to help people who don’t know they need help, listen to people who have stories to tell, get in touch with the feeling of exemption. I don’t want to have to be somewhere at a certain time, I want to write the stories that I hear and sail to places I’ve only heard of. I want to put my arms around someone who could use a hug, and wipe away the tears of years of frustration.

If I could simply save our Oceans I would do that too. I’d tell other sailors to take care, not to litter, and to think of the sea as part of the family, as trite as that sounds. I think I’ve just shown you a ‘piece’ of my soul, again.  Goals and Gifts. Lets all search for our own.

From my heart to yours, may you find your gifts that get you to your goals!

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