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MS: apprehensions and admissions on Ocrevus

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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.

waves of change, oceans of opportunity….

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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.

enough is never enough

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

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

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

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

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

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

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

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

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

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

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

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