peace

MS: apprehensions and admissions on Ocrevus

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.

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.

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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