stress

MS: apprehensions and admissions on Ocrevus

, , , , , , , , , , 0 Comments

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

, , , , 1 Comment

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….

, , , , , , 2 Comments

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

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

, , , , , , 0 Comments

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.

life-ring-water-e1449241102284

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.

wog-121

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.

seahorse-jpg