symptoms

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.

buoyant, beautiful and brave….

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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!

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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

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

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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.”

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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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ripples and pebbles

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People like me, those of us who tote around a diagnosis of MS, will at times appear like you. I’ve heard it said that we resilient souls who have MS are like snowflakes, no two are ever the same.

That may be true but we all understand similar symptoms can sometimes mean the same thing. Its very hard to put into words. Most of us can understand a smooth surface, like a body of water without even the slightest ripple. It’s the beautiful epitome of quiescence. There are moments in all our lives that are frozen in time, a moment where you feel…… well, you feel perfect. But even pebbles can cause ripples in our souls and our lives.

The smooth surface of water, seeing it or languishing in it, creates for me a feeling I’d like to wrap around me as a cloak when I have exacerbations. Sometimes I have to go into my mind to accomplish it. The Ocean, even with waves, is my happy place. I am a Salty Soul at heart. When someone throws a pebble into the water, it sends little waves out in all directions. You just never know how big the ripples will become. Could be nothing at all, a normal symptom such as increased pain and numbness OR it could be more significant. Sometimes I feel someone has tossed in a boulder.

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That’s how it feels to have an MS exacerbation. It’s a giant game of Clue trying to figure out what caused the symptoms to worsen, how to make them better, and if they will ever go away at least for awhile. I find that when I have no stress, my symptoms are miraculously wonderful. Even I sometimes forget I have MS when I’m in my happy spot.

Now some people progressively get worse, this we know is called Primary Progressive Multiple Sclerosis. I fortunately don’t have this kind, mine is Relapsing/Remitting; meaning that I’m fine for awhile, but then it seems I have a worsening of symptoms. I sometimes wonder if I have progressed to Secondary Progressive Multiple Sclerosis. It kind of sucks either way to be honest.

I was doing well for about a year. But within the last two weeks, I started developing weakness on the right side of my body and began falling to the right when I least expected it. I started falling into walls and tripping over things like my feet, chairs, floors, etc. Even my right heel on my tennis shoe showed more wear. This may be the worst exacerbation I’ve had in years. I try not to tell people what’s going on, because I don’t like to complain.

I have an invisible disease, and if you didn’t know me well, you would not even guess I have MS. That’s good I guess, but sometimes people just don’t understand. They forget you have a disease. You don’t want to talk about it. You work on the premise nothing has happened. Inside though, the idea of these worsening symptoms race around in your brain and you pray they don’t get worse. Your colleagues and friends have sustained expectations that you aren’t even sure you could accomplish if you didn’t have MS.

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So it is, I am having my second of 3 infusions today. One thousand mg of IV Prednisone (solumedrol). It takes an hour to infuse three days in a row. By tomorrow I’ll be crawling out of my skin. I’ll probably be early to work after I make a new dust ruffle for the bed, weave new area rugs for the kitchen, clean the bathrooms, give the dog a bath and maybe the cats, limb up some cedar trees in the yard, wash my car in the rain, and vacuum it out too! Yuck.

For those who don’t understand MS, I’m seriously happy for you. For those who have friends or loved ones with MS, don’t worry, we’ll be okay! It seems to help to write about it and vent, per se. You can’t understand how we feel and that’s okay. It is nice when someone asks how you’re doing, just occasionally. You can’t know what the symptom of fatigue really is with this disease unless you have it. Urinary symptoms, visual symptoms, muscle weakness, pain, numbness, tingling and I could go on and on. It’s different for everyone and therefore a generalization is not possible. Fatigue is my worst enemy. There are no words.

I do find it comforting to talk with other people who have MS, compare notes, see what helps them and what doesn’t, talk about new medications and ones we have failed. If you have MS and you are reading this, please feel free to email me, I love feedback!

We can’t always have what we want in our lives, but I am blessed with so much, and I’m not bitter about this ripple on the water. At least I’m alive. I know my kids love me and still need me. Hopefully I’ll be here on this planet for a long time, I have so many plans and dreams left to pursue. I’m trying to find a way to live on a sailboat in the Virgin Islands, my happy spot. Until then, it’s life as usual. This too shall pass.

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