Ocrevus

I have completed my first 2 infusions of Ocrevus, the very first disease modifying treatment for progressive MS. I had no allergic reaction and do not see any side effects. And now I don't have to go back again for six months!

May the end of my MS progression begin!

Do you ever get mixed feelings?

Why is it that good news can make us sad?

First, I got word from PA saying I would receive 62 hours of home health services per week. It was a long process, and I cried with relief when I got my wish. Life got a lot easier. Whew! But then I felt sad about needing the help in the first place.

More recently, I learned that the first ever treatment for progressive MS, Ocrevus, was approved and available soon. I've been hoping for years to find something to stop my abilities from declining. Again, relief that help is on its way! But I also feel sad that it's even necessary.

I guess I've found ways to pretend life is just fine. In some ways, it is. I have lots of love from friends and family. I have a beautiful home and lots of things I enjoy doing. I'm good at focusing on the positive. Sometimes things shake my reality. Physical care and advanced medicine are two things most 46-year-olds don't have to consider. I do.

We take the good with the bad. So it's okay to be happy and sad at the same time. It just feels odd.

Thanks for listening!

patient

1. 1 :  bearing pains or trials calmly or without complaint
2. 2 :  manifesting forbearance under provocation or strain
3. 3 :  not hasty or impetuous
4. 4 :  steadfast despite opposition, difficulty, or adversity

Are you patient? I think I must have been born with a patient gene. 

As a teacher, I had lots of patience for my students. They had struggles, and I think my calm, easy-going manner was helpful.

I have daily frustrations with MS. I have honed my patience over these 20+ years. My mood is always better when I can calmly face my challenges.

 

Now, I am nearing the end of a new test of my will to be calm. I moved to PA in September 2016 and immediately applied for a state program to fund my home health care. The application said "30 to 60" days. It has now been over 5 months!

Sigh. All I can do is wait. I'm tired of complaining but I can't seem to help myself.

Thanks for listening. 

Wishing you patience when you need it!

living in the moment

I am reaching new depths of living in the moment.

For as long as I can remember, I have been taking photos of family, friends and events. The way I write in my journal to preserve my memories, I loved having visual reminders of my life.

Due to my MS, I now lack the strength and dexterity to take pictures unless I have just the right set up time and no pressure. So taking pictures to document the things I do doesn’t really work anymore.

Now, when I am in the moment and want to photograph whatever is happening, I must sit back and take in the moment fully without documentation. Maybe I will do more writing to describe the things I see, but it’s not as satisfying.

So I am practicing taking in the sights and sounds and appreciating them just as they are. Wishing you many moments of things you love!

"Who Moved My Cheese?" by Spencer Johnson

How do you handle change? I recently read the book "Who Moved My Cheese?" by Spencer Johnson. The most important things I learned were to anticipate change and find a way to enjoy what happens.

There were four characters. They all found a great store of cheese which eventually disappeared. Sniff went ahead, sniffing out possibilities, until he found more cheese. Scurry went ahead without looking until he found more cheese. Hem kept hoping the cheese would reappear, but he eventually realized he needed to go out and find something new. Haw refused to leave the empty site of his beloved cheese, insisting that things would get back to normal.

Having MS has "moved my cheese" more times than I can count. I have had no choice but to move forward and find new ways to do things, new ways to pursue my goals. When my mom was here, she was great at sniffing out what needed to come next. I'm not great at predicting but I'm excellent at adapting.

And it was Hem who discovered that picturing a positive outcome helped him face the changes ahead. I'm trying to do that now. There are changes that my disease may cause that I greatly fear: losing all movement, losing the ability to communicate, and needing so much physical care that a nursing home facility would be my best situation.

If I can't move or communicate, I hope I will find a way to live happily in my thoughts. If I need a nursing home, I hope I can create a space within it where I could be happy (photos of family and friends, great art, comfortable computer set up). I hope these things won't come, but if I can picture them with happiness I think I'll be okay.

Face the changes ahead with a strong heart and spirit. You will be okay, too.

learn to listen

Listen to your #body. If something doesn't feel quite right, it's worth taking the time, even postponing plans, to be sure you are #healthy.

prevent

RE: preventing osteoporosis, non-ambulatory women

Dear doctors,                                                 

I have a concern that I wanted to bring to your attention. There's no way to change the situation for me, but maybe it could be better taken care of with future patients.

Within the last year, I was diagnosed with osteoporosis. Dr. K had been concerned for years about my lack of weight-bearing, but I did not know how to help that.

I wish that someone had told me about standing frames while I was in rehab in 2007. I think that might have helped prevent my osteoporosis. I also wish that we had done a bone scan several years ago. I have been non-ambulatory for 15 years. If we had screened earlier, we might have prevented the problem.

I wanted you all to have this information. Maybe the use of a standing frame could be suggested to women who cannot bear weight. And perhaps bone scans could be done for women after five or 10 years of non-ambulation.

life overall

Do you ever get frustrated about how difficult life can be? If so, look at your life overall. 

I get frustrated daily. But recently I noticed – look how great I'm doing! 

Do you have money for food, clothing and shelter as well as some things just for fun? Do you have people you care about who care about you? Do you enjoy your job? Do you enjoy your free time?

I can answer yes to all of the questions above. In fact, I have an awesome life in spite of my daily difficulties. So I let the anger and sadness have their time, and then I remind myself that I am conquering each challenge.

You can do almost anything if you have confidence and take positive actions. Let the difficulties arise, then step over them to find something that makes you happy. I'm not saying it's easy, but you can do it!

Helen Keller

 “I who cannot hear or see have every reason to sit in a corner with folded hands and weep. If I am happy in spite of my deprivations, if my happiness is so deep that it is a faith, so thoughtful that it becomes a philosophy of life,--if, in short, I am an optimist, my testimony to the creed of optimism is worth hearing.”

Excerpt From: Helen Keller. “Optimism.” 37Fides, 2012. iBooks. https://itun.es/us/PR7KI.l

Find ways to be happy. Ms. Keller did it. I'm doing it. So can you!

life-sustaining abilities

I want to apologize for my saying that you can't die from MS- some upset people. I completely agree that MS can take away life-sustaining abilities. So, yes, you can die from MS.

Still though, that is not going to happen one year after diagnosis, unless there is an extreme situation I've never heard of. I just don't want the public believing that MS is a death sentence.

Most people, before they die of MS, live with some degree of disability and frustration. I was diagnosed 23 years ago and am now quadriplegic. I'm not saying that MS is a happy thing, but it doesn't mean your life is coming to an end right away. I worked for 10 years as a teacher and now enjoy having more time to spend on my photography and writing.

I am frustrated every day, but I love my life.

misrepresentations

I wish I didn't see so many misrepresentations of MS in entertainment. I was watching an episode of "Hart of Dixie" in which a young woman was earlier diagnosed with MS. She wants to perform in a parade on a hot summer day. Her doctor urges her not to perform because she may encounter another exacerbation. That much is true. The heat of summer can increase MS symptoms.

But the young woman says, "Doctor, you and I both know this may be my last chance to really live." That's a little over the top. One year after diagnosis, life is not likely to end. Then again, it depends on what your expectations are when you speak of "really living."

In other shows, I especially don't like to hear people claim, "she died of MS." MS itself is not fatal. It is only after years of progressive disease that someone might die from complications related to MS.

Anyway, MS is not the end of anything. It is the beginning of a challenge, but life goes on.

purpose

I have had another interesting experience regarding my spiritual growth. I had a session with a friend named Margaret, an angelic healer.

Most recently, I was hoping that Margaret could help me unlock any emotional blocks that were preventing me from responding to the Advanced Cell Training program I tried that I took a break from last July. The training program offered me the hope of recovery from the MS in my life.

My wish did not come true. We did not find any answers to healing this disease. She did come up with a different answer that seems to make more sense, as I have long suspected.

Margaret believes in past lives. During our session she guided me to see the life I lived during the Civil War. I saw myself as an eight-year-old girl with blonde curls (just like my niece) hiding in a corner watching chaos in the town around me. I had an awful pressure in my chest as I saw the way people were treating each other. Women and African-Americans were being verbally and physically abused, and no one was doing anything about it, as far as I could see. At that young age, I couldn't find the words to speak against the way people were interacting.

I grew up to become a teacher (just like my current life). I found that I could use my position to educate children, our future leaders, about the importance of treating others with kindness and respect.

Margaret pointed out that the life I’m living with MS is teaching kindness and compassion to many people. All of my fabulous caregivers use patience and compassion to help me every day. The students I once taught hopefully learned from my example as I treated others in the way I think everyone should be treated. I believe I carry the same example with me wherever I go. And people pay more attention to me because of my physical condition, so my example stands out in the crowd.

The biggest idea that I am trying to assimilate is that the disease I have does not need to be fixed. The circumstances of my life serve a purpose.

Margaret says that our soul chooses each life to further our spiritual experience. My physically limited life spurs me to focus on my spirituality. With every difficulty I pray and search for deeper understanding and comfort. I have come far in the expansion of my mind and spirit, much further than I might have without this reason to search.

As much as I do not want it, this life experience is very significant. I must follow the path in front of me. Now, if I can remember to keep this perspective when I face daily frustrations, I may feel comforted and better able to handle my anger, sadness and fear. It will take some practice.

I am so grateful to have God, my family and friends to support me every step of the way.

Thank you for listening. Knowing that you are out there helps to make me feel better about the life I am leading.

find some strength

Thursday, June 12, 1997
5 am I woke up out of achiness, possibly due to my Avonex shot (which, by the way, I did by myself for the first time!).

With this early morning time to myself, I’ve been reading the Bible a bit. I’ve been doing this a lot lately. I’d like to learn from God, find some strength, and learn to listen. I’m kind of muddling my way through, but I think that’s ok, it’s part of the process. This is such a hard time in my life and I need help. It would be nice to add a deeper spirituality. Like the Blind Mellon song –“when life is hard you have to change.” With a little luck, it’s for the better. 

From my book, Finding Our Light

MS really stinks!

MS really stinks! (imagine harsher language)

Yes, it is what it is, but this "is" is infuriating! Yes, if I concentrate more on "who I really am" I know that I am not my body. I am aware that I am an individuation of God. This experience is as valuable as any other.

But that doesn't help me move my body the way I want. It doesn't help me do the things I want; the little everyday things I need to do.

Thank you, God, that I can write about what I'm feeling and let the anger ease away.

Thank you, friends, for listening.

loved

So I've been reading about publishing books. The first bit of advice is to build an online presence and start talking about the book. So I'm going to share a little at a time and see what you think. Title: Finding Our Light.

"I was given a gift from the day I was born, throughout my childhood and continuing to the present day. I was given love. I have felt loved as far back as I can remember. I didn't realize what a gift it was."

Do you feel loved? I hope so. If you're alone, listen to your conscience – if you're quiet, it will tell you that you are special and important and lovable. Listen carefully.

optimism

Can optimism be learned?

I'm writing my memoir in the hopes of spreading the idea that life can be good despite adversity. My story of MS may be sad, I'm  certainly sad sometimes, but my life is truly wonderful. I have many loved ones. I have activities I enjoy. I have a wonderful place to live and money to pay for the things I need. My health is not average, but it is manageable. I look forward to every day.

It does take effort to look for the bright side in every situation. It can take some imagination. For me, the effort is worth it. Finding a way to enjoy my moments, no matter what they involve, is so much better than spending my time feeling sad, angry or sorry for myself.

Yet, I have met people who don't seem to have any other way of looking at life besides seeing misery. They see it and can think of nothing else. I see misery also, but I try to make that a very small part of my thoughts. I have tried to help some sad people find a brighter outlook, but I have rarely succeeded.

Can I teach optimism? My goal is to express it and hope that others gain something.

Are you able to look on the bright side? I wish you success in doing so.

YOU

You are light and love. This is what I try to remember when I'm having a hard time.

I practice every day before I even get into a difficult spot. I'm reiterating some of what I have learned from Eckhart Tolle. I sit still. I sense what is around me: the way the air feels, the sounds that I hear. I usually need to keep my eyes closed because visual stimulus keeps my mind busy. I acknowledge that the world around me is created by the way I see it. I appreciate the good and the bad because I am learning from all of it.

Next is the most important part. I step outside my mind, outside of Liesl. I feel myself as part of the one being from which we all come. I picture myself as warm, white light without form. That light is loving energy. I let myself feel surrounded by my own light and love which is the same light and love that comes from God.

 
I practice that feeling every day for just a couple of minutes, so that when I'm feeling negatively about myself or my circumstances I can go to that place of light and love. Even if I don't feel better in that moment, I know that I will be okay eventually.

I encourage you to develop this feeling of light and love which is YOU. It is always there when you need it.

Why me? What's next?

I always encourage people not to ask, "Why me?" There is no answer.

And what if there was an answer? Why me? I did something wrong. I didn't do something I should have. Someone did something to me. I'm getting paid back for something I did to someone else. Are any of those answers useful? No. You can't change the past. Putting blame somewhere doesn't solve the problem.

When I was diagnosed with MS, my doctor told me to quit smoking. All doctors tell you to quit smoking. Unfortunately, no one explained at the time (I don't think it was known) that smoking could make MS worse. Had I known, I hope I would have quit on the spot. But I can't go back.

It only makes sense to me to ask, "What's next?" What can I do to move forward? How can I make this problem be useful? Can I learn something? Can I then teach what I've learned?

And there is a very new idea that has been brought to my attention. I have read and heard people say that our soul chooses the journey we will have before we are born. Ugh. If that's the case, I'm not thrilled with my choice. At least that's what I thought when I first encountered this idea. Now, I see that it was an interesting journey to choose. It's an incredible learning experience that I never would have had without my disability. That said, I hope that my journey includes finding a way to heal the damage that has been done by multiple sclerosis.

What do you think about that? Can you imagine that your soul chose the life that you are leading?
Whether or not we had any choice in our circumstances, to be happiest we must find a way to live with what we have just as it is. So, please try not to ask, "Why me?" Instead, ask yourself, "What can I do to make the best of the situation?" The answer will be much more useful.

nothing is wrong

Here is a thought from Neale Donald Walsh:
Nothing is wrong. Every experience or trial is here to help me learn who I am and give opportunities to demonstrate myself; to give others my abundant qualities.

That is a pretty profound thought. Things go wrong all the time, right? Well, Neale says no. Life happens. The things that we feel are wrong are simply things that need to be seen in a different light.

Multiple sclerosis is one of those things for me. I am trying to see it in a new way. This disease is giving me a unique experience. It is teaching me a lot. I might want to argue because I don't like what I see – it must be wrong. Okay, maybe not. It is helping me learn about myself and be brave enough to share my experience with others. It is also the main reason I pursue spirituality. I'm looking for comfort and support. I have found that in God and the spiritual world generally.

I'm changing another word, also. A friend pointed out that by using the phrase MY MS I'm expressing ownership. I will be much happier to claim ownership of MY MIRACLE when it occurs.

So, I'm changing the words "struggle" to "experience" and "my" to "this." MS is no longer my struggle, my suffering. MS is this disease that I am dealing with right now. This MS is an experience that has given me quite a lot, and I look forward to the day this MS is simply a memory.

Change your thoughts and you change your world. – Norman Vincent Peale
It is no small task to change your thoughts, but it is amazing how your world changes when you are able to see it in a different light.

health is wealth

It is health that is real wealth and not pieces of gold or silver. ~Mahatma Gandhi

As a person with multiple sclerosis, I completely agree with this quote. Every day that I feel healthy is infinitely more valuable than any money I could save. Often, we take our health for granted. We are used to doing things as we please. Usually, it's not until we have a problem with our health that we realize what a gift it is.

How are you today? Feeling healthy? Take advantage and do something that makes you happy. The things you do today will create memories which will last throughout your life no matter what your finances or your health.

But don't let this worry you about health problems you don't have. You never know what the future holds. You have today. Do everything you can to enjoy it!