When you hear those words, what do you think? Well, from someone who is ‘older’ and has MS, what we mean and what we say are two different things. I could chalk this up to just being 55, I’m sure. Anyone born in the 60s or before could relate. When you have MS, forgetting words is a daily occurrence all by itself. Forget about being old. So, hear what I Mean and not what I SAY….
Recently I was driving home, talking on the phone via the link to my car (I am sure there is a name for that, but I can’t remember what it is). I was trying to explain to my husband where I was. I told him I was on highway 9, taking the “100th-street exit.” Now, understand, he drives for a living. He knows cross streets and such in all sorts of places. He very calmly says to me, “Hon, I have no idea where you are.” At this point, I become very frustrated. I reiterate what I said before.
He still has no idea what I’m talking about. Then he says, “do you mean you’re on highway 2?” “YES!!!!!! that’s what I said!” Then he says I had told him highway 9. “Okay! Whatever, 9, 2, same difference. You’re supposed to know what I mean!” Just one example.
Sometimes I just don’t have the words to say. Word finding problems are real. I know that as we age, this can also become an issue, but with MS, the issues are ten-fold. Some of you may remember your mom or grandmother go through a list of your sibling’s or cousin’s names while trying to yell something at you. I do this with everything. Apples, cars, patients at work, colleagues, dogs, vacuum cleaners, cats, sisters and kids. It’s not fun. Anger breaks in every once in awhile when I can’t remember. Then I have to just breathe through it (when I remember to).
I have been on a newer medicine called Ocrevus, for about 2 years. I have not had any relapses to speak of, and this medicine, which I receive in a 6-hour infusion every 6 months, is supposed to not let me get worse. So far, so good. At the end of the 6 months, when it’s time for another infusion, I was told the medicine is no longer working, per se. I do notice I feel better, right after all this. My memory seems better, my walking is better and overall, its okay I think. I would be interested to know if others taking this medicine feel the same or have other experiences.
When my mom was here, before she passed 9 months ago, I would call her before I had the infusion and afterward. She always offered to go with me, but realistically, there is no reason for someone to go and sit there for 6 hours or more, while I receive this medication. Perhaps I just can’t allow someone to give up so much of their time for me. Maybe I just would rather do it alone, proving to myself I can handle this wicked disease.
I don’t know. But she isn’t here and I miss the phone calls desperately, when I could hear her sweet voice. Now, I talk to her anyway; I just can’t hear her on the phone. In my heart I know she’s with me and I feel reassured I’ll be just fine in the end. I can hear what she means. Ironically, she is with me now always when I go to get Ocrevus.
How lucky am I to have had such great love in my life, that it hurts so much to say goodbye.
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.
Sometimes the tendrils of ones life become so intricately interwoven, you can’t quite figure out who or where you are. This year, 2018, has been a ‘passing through’ for me; a very difficult year. In other words, the only way out is through. Heartbreaking, harrowing and grievous. I haven’t written for many months as I simply have not been able to unearth the courage. Hurricane’s Irma and Maria devastated the islands of my other “home.” At least it’s where my soul feels at home. I wasn’t able to go to my favorite places when I was there this year. The very people of these islands are disheartened and broken in so may ways, as was I, when I saw first-hand the devastation. Life must go on, and as it does, as we begin another trip around the sun. Summer is the best time of year for me, at least it used to be.
The second of my Ocrevus infusions occurred in March, before I went to my beloved islands again. I’m not convinced anything is working well at all. My feet and my soul are symmetrically numb. I’ll probably go ahead with the third round in September – just because. Maybe it takes more time to benefit the MS, overshadowing and silently convoluting my life.
Most of all, my dear sweet mom,Jeanne Francis Barry Frostad, passed away on July 16, 2018, most unexpectedly. She was born on April 4, 1944. Technically, she had squamous cell carcinoma of the base of her tongue. She never smoked a day in her life. She also had pulmonary embolisms, which unexpectedly cut her life short without so much as even a meager warning. She was 74 with so much life left to live. She and I were going back to the US and British Virgin islands this fall, she talked about it with me almost daily. She loved it there as much as I do. I am happy I was able to convince her to see those beaches. The photographs are all we have left to highlight the memories of our trip, and our entire lives really.
Do you ever look at an old photograph, and remember that day only because of what the photograph portrays? “I remember that sweater,” only because its still there in that picture. I remember her smile, her laugh and how much I loved her, because of that picture and the ones in my heart. I only knew her as my mom. I did not know the woman. Looking at some of the photographs, it is only NOW that I can see how beautiful she really was. Just a ‘mom’ but she was so much more than that, to so many more people than I know. She touched so many lives.
In these photos I can now see that Mom and Dad were in love, and that Mom really was our rock. She made everything ‘okay’ in our family. My sisters and I, her grandchildren, and even her great grandchildren will be the Encore of her life.
Mom loved flowers. She loved creating peaceful environments for herself and others. She spent many years planting peoples pots with carefully selected flowers and greenery to enhance their homes, decks and gardens. She was gifted beyond measure. My sisters and I called her almost daily to ask questions about our own pots. Does this flower like sun? Does this one grow tall? And me, “Mom will you just DO my pots?” What plants should I buy? Do you like this? All these questions were texted to her, or one of us called her daily. Come to think of it, we were probably more needy the older we got, right Mom?
I made her come with me to buy my couches and find throw pillows that matched my house (not the ones that came with the couch, Heaven forbid!) Alix recently asked her about some green flower pots she found to see if they were “okay.” With Mom’s blessing, we purchased accordingly. Kirsten’s house has pictures hung just like mom would do. “They must be hung low enough so that when you are sitting, they are at eye level.” This ideology was ingrained into us since we were small. Now when I walk into a business office or even other people’s homes, I chuckle to myself when I see pictures up near the ceiling. She would shake her head and smile. Never hang two pictures on a wall together, always an odd number. Never paint two walls the same color in any room, only 3 or 1. Okay Mom.
Baby Brig smelling the flowers, like his “Bean” would do, and like his mommy taught him.
There are so many times I reach for my phone to call Mom. I’m still in the middle of the passing through. If I’d only known she had just 74 summers to live, I would have done things differently, more purposely. I would have visited her more after Dad died in her little house in Snohomish, and then in Wenatchee with her new fiancee Bob. I don’t think I could have called her more often, but I definitely should have asked how SHE was doing instead of being the perpetual daughter, talking about my own life. My sisters, Alix and Kirsten, are going through the same thing for they called her as much as I did. We ask ourselves, ‘how did she do it?’ I mean listen to all our problems. Never once did she feign throwing her phone out the window of her moving car to prevent us from bombarding her with our emotions, life, children, husbands, plants and pictures. She smiled. She listened. She cared. She loved with all her might. I’ve heard it said that children pick their parents before they are born, well then, we three souls waited in line to have her as our mother I guess. I’m proud to be in the Encore of her life.
My mom was the biggest constant in my life, my rock. Kirsten’s and Alix’s rock also. Jody, her first grandchild, was especially close to her, and was the first to affectionately call her “Bean.” Bean has 12 grandchildren and one great grandson. She believed she was blessed, I know, as she often told us that.
I feel so lost without her, adrift in an ocean of emotion and sadness. I don’t know what I’m doing in my life anymore. It all seems without purpose. I don’t know how to find what I’m looking for or where to go to find it. For 54 years she has been with me, and I think I took that for granted. I am blessed to have my 6 adult children, 1 grandson, and my sisters. I do KNOW this. But passing through, trying to find a way within the tendrils of my intricate life is exhausting. Yet, how can I complain? Many others have a more difficult life than I do. I don’t have to work, my husband takes care of all the bills with clearly only love in his heart. I travel to the Caribbean every year to see my grandson, Brig. I don’t get to see all my kids regularly, as they live their lives, but the moments I do, I hold close to my heart.
I have everything anyone could want, and all my pictures are hung with care, everything inside and outside matches. I just don’t have my mom anymore. It sounds childish but it’s true. Where do I go from here? I know I’m not alone. Many people live everyday without a mom, the difference is, I understand how it feels now. It’s heartbreaking. The photographs mean so much now, and the videos of her on my phone. I should call her and tell her I’m doing okay today…. but I can’t. She’ll never know how much she is missed but I think she knew how much we all loved her. I’d give anything to hear her voice or smell her again.
All her grandchildren together at Lake Chelan this summer, her last. Blake was missing in the group photo, so is included above. Also missing, but in Heaven now forever with his Beanie to hold him, is baby Tyler. She would have loved to see everyone together. I believe I’ll see her again someday, but it will never be soon enough. There are so many questions left for her to answer, but she taught us very well. We need to remember how to make our own choices without her help; maybe close our eyes and ask her to send a sign? We still have more of her belongings to go through, so much to find a place for in our own homes, my sisters and I.
We will always love and miss you mom, we are here because of you. You taught us all that you could, and hopefully it’s enough to get us through this life without you. I hope I am half the mom you were to us. I’ll see you again one day, but not today. If I close my eyes, I can see your beautiful smile and hear your chuckle. I’ll miss having margaritas at Todo Mexico on the river with you. I’ll miss how you made everything all right in my life. I have to remember I am part of you, and for that I will be eternally grateful. Love you more Mom!
This song reminds me of how to go on without you. You loved listening to Kenny Chesney with me, and though you didn’t get to hear this song, I know you would agree.
You are my hero.
This post is dedicated to my mom who was sad I had lost one of my most valuable friendships. I miss you a lot Kat!
I have had multiple sclerosis for 20 years this November. Honestly, I haven’t written that in a sentence. Ever!
Twenty-five years ago, if someone had told me this disease would occupy my body, I never would have believed them. Okay, maybe for a split nanosecond the thought would have petrified me, but not nearly as much as being told, “you have MS.” I was in denial in the beginning as I started to lose the feeling in my feet and legs. I stretched, flexed, rubbed, tried to exercise until clearly nothing I tried was going to help.
I am fortunate, I have to say, in that I could be much worse than I am. Still, it’s one of those chronic illnesses that is nearly invisible. I may “look” fine, but inside the pain is intense, and something I don’t disclose to just anyone. Anxiety, fatigue, confusion, forgetfulness, numbness and tingling are the tip of the proverbial iceberg. Still waters do run deep.
I’ve been on Copaxone (daily self injections) for roughly 20 years, on and off, and have tried several oral drugs for my relapsing-remitting multiple sclerosis. One side effect of all those injections was a lot of lipoatrophy (loss of fat from injection areas) and I was simply exhausted from daily doses. You might think, “Yeah! I can target the fat in certain areas like my belly.” That’s a good thought, but its not a smooth transition, you end up with a lumpy tummy with hard, injection-site scar tissue along with fat loss. Believe me when I tell you, it isn’t even parenthetically pretty.
With oral medications, I often forgot to take them, Tecfidera, Ampyra, and others. It was time to switch. I was panic-stricken to try a new drug, there are so many side effects to worry about, and which drug is always the big question. When my neurologist suggested Ocrevus, once-every-6-month infusions, I was afraid but willing to try.
In August 2017, I had my first 4-hour infusion of Ocrevus (ocrelizumab) which was uneventful, (other than the swollen throat and intense itching of the back of my throat, neck and head), and I say that as mirthfully as possible. It was actually a common response I found out later. I was given two Benadryl and a small dose of IV prednisone pre-infusion. At about 1 hour into the infusion, they stopped the Ocrevus because of the itching and swelling, and the symptoms immediately dissipated. The other option would have been IV Benadryl. There is no way I could have driven home after that. Luckily that didn’t happen. After 30 minutes, they restarted the Ocrevus infusion and I had no further adverse reactions or symptoms.
If you have ever had IV methylprednisolone, 1 gram infused over an hour for 3-5 consecutive days, you can relate when I tell you Ocrevus was not nearly as bad. I was a little bit afraid after the throat swelling and itching, but I was determined to make it through the infusion.
After the first infusion, which was a half dose, I had the second half-dose infusion two weeks later. The second infusion was completely straightforward. I did have the Benadryl and IV prednisone as premedication again, but no symptoms other than drowsiness from the Benadryl. I am sure that counteracted the prednisone a bit. De novo, post-prednisone symptoms are beastly!
It’s mid October, I am experiencing some leg pain and what seems to be joint tenderness. Now I concede, I may just be old and having the first signs of arthritis or osteoporosis BUT I hope not. I just tell myself, “….this too shall pass.”
I have to say I have had a number of prednisone infusions over the course of 20 years, and as much as I despise them, they do help. I am optimistic the Ocrevus will completely abolish any chance of relapse of my MS. That is the goal anyway. If you have not heard of Ocrevus, by all means, ask your neurologist, but you can read more about it here.
Genentech, who brought this drug to market, also offers patient assistance, coverage support and other information.
I’m very hopeful this will be the drug that works for me. The joint aches and leg pain may just be temporary but are a possible side effect of Ocrevus. I’m willing to overlook it right now. I want to be strong and exacerbation-free for once in 20 years. MS is one of those diseases you can’t see, but it is with me all the time. I may not tell you if I have pain, numbness, dizziness or fatigue, but it’s always there.
I am not sure how one gets to the point where you just know everything is going to be okay. Somehow, I not only know it will, I FEEL it will. I was fortunate enough to get back to my happy place twice this year, for nearly 3 months total. The British Virgin Islands. My first trip here was in 2008 with my husband.
I had always wanted to go, since I was in 6th grade and one of my besties at the time, Kay Adams, used to tell me stories of growing up on St. Croix, riding her horse ‘Lady Bug’ on the beaches there. Ever since those childhood days, I knew I would go. (I wish I knew where SHE IS today!)
People on the west coast go to Hawaii or Mexico. People on the east coast go to ‘The Islands,’ either the USVI, BVI, Bahamas, or somewhere south. In my adolescence, I did go to Hawaii several times on family trips. I always thought it was beautiful, and it is. The BVIs are the way I imagine Hawaii must have been at least 50 years ago. No one is in a hurry, no one cares what time it is, and if you go, the BVIs are the epitome of “island time.”
There is no such thing as being late, unless you need to catch a ferry to a neighboring island. The ’80-80-80′ rule applies here. Air temperature is always 80 degrees, water temperature is always 80 degrees, and the visibility underwater is always 80 feet. This, according to my daughter, is Where The Coconuts Grow!
It’s so true, as you can probably see from this photo of Long Bay.
This year my first grandchild came into this world. Peter Brig Pieschel was born in this amazing place. While healthcare in the islands is running the tortoise’s race, a bit slowly at best, my healthy little grandson arrived on his own time schedule, June 13, 2017. This year I went two times! The first time was to get ready for him, with a little fun on the side; and then I went again arriving the day after he was born, with even more fun on the side!
Summer in the Islands is excruciatingly sweltering with an abundance of mosquitoes and no-see-ums. When baby Brig was born though, I was there to help take care of my first grandchild, which was to say the least, an immense blessing. I look back when he was so tiny at 6 pounds 9 ounces. He’s nearly 16 pounds now at about 4 months.
Then hurricane Irma hit, a category-5 storm, which is now confirmed as the worst hurricane ever in the history of the Atlantic ocean. This storm devastated the British Virgin Islands and the kids’ boat/home. Jody and Brig flew home to me 2 days before the storm hit. Peter stayed to secure their boat and multiple other boats. After much praying for him and his own survival skills, Peter made it through the eye of a direct hit from Irma and so did their dog Betsy.
They are all safe in Washington now but have no home to go back to. My heart is in these beautiful islands, with the people who live there, expats and natives alike. Right now there is nothing to go back to, and these islands have been ravaged. While so many are trying to help with the faithful anticipation of rebuilding, I find myself wishing I could do more.
Taking care of their little family along with other family members, is a long way from direct help, but somehow I know I’ll go back soon. I also know I’ll be swimming in the still-clear waters of Tortola and maybe get a chance to spend some ‘Soggy Dollar'(s) in the islands. What they need now, in a country that is 83% tourism based in some form or another, is tourists!
Stacy and I in Long Bay, chatting,floating and enjoying!
Sweet tiny Brig.
Baby Brig with his Betsy…. I love this photo.
I know the kids were brave, especially Peter, but also Jody when she left that island with nothing but a backpack on her back and their baby strapped to her front. With tears in her eyes, she left her home, her island, and her husband, not knowing if she would see them again.
My heart aches for all they lost, and for all their friends have lost. After spending so much time with them, living there on Tortola, I have come to appreciate that tiny part of the world more than ever. I also know they have the fortitude to keep pushing on. After all, it’s their stamina that has kept them on that tiny island, at times, with all the adversity one could imagine, complications that come from thin air, and ridiculously beautiful weather, all without reticulating a gigantic hurricane into the mix.
As for faith. I have all the faith they will need. I KNOW they will be okay and in the end, I am CERTAIN something amazing is coming their way.
To see how they survived Hurricane Irma, go to Jody’s blog, www.wherethecoconutsgrow.com – she also has some pretty amazing photos after the hurricane and multiple other links to help survivors of Irma and Maria in the USVI, BVI, Puerto Rico, Florida, Texas and the wildfires in the US.
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.
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
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.
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!
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.
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!
