Multiple Sclerosis

Blogs about my journey with MS

hear what I mean, not what I say

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When you hear those words, what do you think? Well, from someone who is ‘older’ and has MS, what we mean and what we say are two different things. I could chalk this up to just being 55, I’m sure. Anyone born in the 60s or before could relate. When you have MS, forgetting words is a daily occurrence all by itself. Forget about being old. So, hear what I Mean and not what I SAY….

Recently I was driving home, talking on the phone via the link to my car (I am sure there is a name for that, but I can’t remember what it is). I was trying to explain to my husband where I was. I told him I was on highway 9, taking the “100th-street exit.” Now, understand, he drives for a living. He knows cross streets and such in all sorts of places. He very calmly says to me, “Hon, I have no idea where you are.” At this point, I become very frustrated. I reiterate what I said before.

He still has no idea what I’m talking about. Then he says, “do you mean you’re on highway 2?” “YES!!!!!! that’s what I said!” Then he says I had told him highway 9. “Okay! Whatever, 9, 2, same difference. You’re supposed to know what I mean!” Just one example.

Sometimes I just don’t have the words to say. Word finding problems are real. I know that as we age, this can also become an issue, but with MS, the issues are ten-fold. Some of you may remember your mom or grandmother go through a list of your sibling’s or cousin’s names while trying to yell something at you. I do this with everything. Apples, cars, patients at work, colleagues, dogs, vacuum cleaners, cats, sisters and kids. It’s not fun. Anger breaks in every once in awhile when I can’t remember. Then I have to just breathe through it (when I remember to).

I have been on a newer medicine called Ocrevus, for about 2 years. I have not had any relapses to speak of, and this medicine, which I receive in a 6-hour infusion every 6 months, is supposed to not let me get worse. So far, so good. At the end of the 6 months, when it’s time for another infusion, I was told the medicine is no longer working, per se. I do notice I feel better, right after all this. My memory seems better, my walking is better and overall, its okay I think. I would be interested to know if others taking this medicine feel the same or have other experiences.

When my mom was here, before she passed 9 months ago, I would call her before I had the infusion and afterward. She always offered to go with me, but realistically, there is no reason for someone to go and sit there for 6 hours or more, while I receive this medication. Perhaps I just can’t allow someone to give up so much of their time for me. Maybe I just would rather do it alone, proving to myself I can handle this wicked disease.

I don’t know. But she isn’t here and I miss the phone calls desperately, when I could hear her sweet voice. Now, I talk to her anyway; I just can’t hear her on the phone. In my heart I know she’s with me and I feel reassured I’ll be just fine in the end. I can hear what she means. Ironically, she is with me now always when I go to get Ocrevus.

How lucky am I to have had such great love in my life, that it hurts so much to say goodbye.


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.

from somewhere south: positive vibration

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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.

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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.

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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surfing an emotional tsunami

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Since I was diagnosed with multiple sclerosis, I feel like I have been engaged in surfing a monster emotional tsunami. I’m sure there are many people on this planet with similar emotional issues, those with PTSD, for instance. While I don’t know “how you feel,” I do know that there is an inexplicable emotional intensity related to things that happen in your life, whether from the past or the acute anxiety of right this second. Giant waves are generally destructive and I feel this one is no different.

I did not receive a diagnosis of MS until I was 33. Up until that point, the early years were relatively easy with kids. When I was diagnosed and my husband left, my baby was only 1 year old. As I have said, it was a blessing in disguise. My ex-husband was and still is an alcoholic, a running theme in my life. I’ve long since forgiven him because what he faces forever is far worse than anything I’ve experienced.

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When the kids were little, I don’t remember significant levels of stress. I remember dealing with problems but not stress. I think my youth was definitely in my court back then, and in my case, not ‘wasted on the young.” I was devastated when he left me for another woman (and I use the term ‘woman’ loosely). I felt especially ravaged after having just been diagnosed with a disease I had never really heard of, small children to take care of, no child support, no job, our house foreclosing, and cars repossessed.

My hands, arms, and upper body were numb, I had a broken heart, and most of all I couldn’t type very well anymore. I had to find a place for us to live, figure out how to get another job doing the only thing I knew how to do, transcription, and try to help my children deal with the loss of their dad at home, and eventually from their daily lives. I also continued giving myself daily injections of Copaxone in hopes my MS would not get worse.

I cried myself to sleep some nights, I prayed I’d wake up and “feel” again. We made it through but I have to say I know what it’s like to stand in line at the food bank for your Thanksgiving turkey. I know how it feels to pay for groceries with food stamps and have your older kids say, “I’ll meet you at the car,” because they were so embarrassed when I would pay at the cash register. When they got home though, they were always hungry.

Eventually, Annie (then about 13), asked if I would teach her how to give me my shots. I don’t know if she wanted to help or if she wanted to poke me with a needle. I showed her how though and she was actually very good at it. She did it off and on for awhile and then lost interest, like 13-year-olds can. Sometimes the injections worked for a year or two before I would have an exacerbation (a worsening of my symptoms), and I would head to the doctor for the dreaded IV infusion of prednisone and hopeful antiinflammatory relief.

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You might not believe it but looking back, the stress I felt was mostly financial and the tidal wave was much smaller then, if that’s possible. Child support was unmentionable, insignificant, and when I couldn’t make the rent, we usually had to move. I always kept my children in the same school though, they had one constant in their lives, and that was their friends. Some people do well with stress, and I think I used to be one of them. I wasn’t the best at cooking, I was not strict like a good mom is, but I know I did the best I could with what I had.

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My last baby learned to walk on a soccer field watching his big brothers play. Medical transcription began to save our lives. Eventually, I could type again and it allowed me to be home with the kids, go to soccer games and practices, LaCrosse, and to the barn for the girls to ride their horses. I tried so hard to give them everything I could but somehow it never seemed to be enough. Keeping up with the Jones’ was harder than I thought it would be, the older the kids got. Eventually I was able to buy our own turkey dinner, and I got to go to school functions and conferences.

The most important thing to me was my children did not have to go to daycare. I’m proud of that. Looking back, life was happy even though it was hard and there were many things ‘the village’ around us helped my kids accomplish when I couldn’t. They all know who they are. Friends dads were the father figures the kids needed and I won’t ever forget them.

The hard part seems over, but in reality I have more stress now than I ever did before. Sleep comes more fleetingly, I worry more about all my kids more than I did then. No one told me the hardest part of being a parent was AFTER they grow up. Those six ‘adults’ are my life still. I feel blessed that they trust me enough to share their problems with me, call me in the middle of the night if they need to, let me share in new relationships with boyfriends and girlfriends, and even past ones I can’t stop loving. I wouldn’t trade it for the world; though this is all part of the giant tsunami that feels like my life.

Multiple sclerosis did not create this giant wave. My choices, life circumstances, 6 kids, my husband leaving me, and everything else I’ve experienced helped shape the wave, helped bring it into being. MS was not the cause, it just gave me the catastrophic rating of a Tsunami. I don’t feel sad I have MS, I feel like “I’m doing it.”

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Because of my job, my husband’s job, and mostly my husband, money isn’t as worrisome as it was before, but the stress of making the money builds the wave higher and denser for me. I’ve realized that Kevin takes care of me more so than anyone ever has, in countless ways. I’ve also realized how grateful and thankful I am for my life and all I have.

Maybe instead of trying to beat the wave, I need to surf the wave, become one with the wave and thereby make it work for me, make the wave go where I want it to go. I don’t have to let it devastate me.

After all, the view from up here is spectacular!

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overcoming gravity

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Everyone knows what insomnia is, I don’t think I need to define it here. We’ve all had it. Restlessness, can’t turn your mind off, too much caffeine all day, a crazy busy day or you just woke up from a nap an hour before you go to bed (duh).

I can assure you it would be easier to levitate; simply overcoming gravity would be much simpler when insomnia hits. I have no idea why this happens to me. Is it related to stress? Work? Children? My dog, Beckham, barking like a maniac at the heat coming on in the night, 3 milliseconds after I’ve finally dozed off? No clue. I have no idea why I can’t seem to fall asleep like normal people do.

On the surface, I THINK I’m exhausted. I work hard during the day at my job, at least I feel like I do. I  also spend a significant amount of time in my car commuting to and from my job, I get home and have no energy to cook (and if you know me, you know I despise this horrendous task), and honestly no desire to do much of anything. I can’t remember how I used to take care of my kids after 5 p.m. back in the day. I can’t be positive I even did.

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My sleep doctor says I need to stay awake until at least 8 or 9 p.m. Seriously? All I can think about are pajamas and flannel sheets when I get home. I haven’t always been this way. I used to be able to sleep when my head hit the pillow. Now, sleeping like that is a fading memory. Of course, exercise is an important thing to consider to get a good nights rest. We all know that. I do walk at lunch during the work day but I could probably put forth more effort. In the last several months, I have lost a significant amount of weight, 60 pounds to be exact. This has helped with back pain and knee pain, but I still don’t find the deep sleep of hibernation. People who do not have multiple sclerosis most likely also experience insomnia, but I wonder if their cure could be an Occum’s Razor; (the theory that the most likely solution to a problem is the simplest one). When you have MS, it tends to throw a monkey wrench into any possible answer for any imaginable problem. I think a visit to the neurologist may be in order.

Lately it has been very wet outside. Living in the NW, you’re secure in the fact that winter days mean the sun sets early, (or the clouds fade to black sooner than normal). It’s dark when I leave for work AND when I get home. Seattle is a beautiful place to live when the sun is visible, when you can feel the warmth in your bones on summer days; and the sky really is “the bluest blue you’ve ever seen.” The surrounding evergreens are calming to be sure. We have the beautiful yellows, golds and oranges of fall, the deep greens of summer and of course the clouds of battleship grey serenading the flooding rains of winter. The view from my bedroom is actually beautiful and I do feel blessed. The rain on the roof, wind heaving through the trees and a stormy night can set us up for a cozy night indoors also. This could make one sleepy and relaxed watching a storm outside the window, right?

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Most nights I can fall asleep, but at 1 a.m. I’m wide awake and can’t seem to drift off again. Maybe I should just get up, clean the toilets, fold laundry, vacuum and be done with it. I could leave for work at 4 a.m. and never be late because of traffic again. Sounds nice but when I get to work I either need an intrathecal grande quad latte drip throughout the day or a nice nap before I go to bed! I can’t win for losing.

I think I understand “Snowbirds.” This is the time of year they all leave for the sun. I crave the sun and the light. Warm blue water, white sand beaches and the warmth of the sun every day. It could be that I am 52. I don’t feel like I’m old, but I’m sure my kids think I am. Is it age that keeps me from sleeping? Hormones? Too much time on my hands? I’m of the opinion its all of the above. I sincerely thought it would take a lot longer to get old. Maybe I’m just dreaming all this too.

Eventually, I’m going Coastal.

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