surviving

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.

bravery, fortitude and faith

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.

 

How you can help:

Go to www.youcaring.com/wherethecoconutsgrow to help Peter, Jody, Brig and Betsy.

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.

Baby Brig and his Daddy.

Can’t wait to return to my happy place!

 

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.

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.

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.

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