November is National Family Caregivers Month

When I meet people and they find out I have multiple sclerosis (MS), they often remark at my productive life. I’ll give myself some credit; I’ve done a lot in my life despite living with MS. I might sound a bit braggy right now, but my intent is not to boast. There is someone else that deserves recognition, because without him I wouldn’t be able to do half of the things I do. This person is my husband.

He helps me manage my life with MS. While I get myself ready in the mornings, he makes me breakfast and coffee. He feeds our dog. He puts together a lunch for me and puts my scooter in the van. At night, he often makes us dinner and helps me get ready for bed. There isn’t a day that goes by that I don’t benefit from his help. But no one sees these things except me, and I enter the world with no one assuming that I have this other person filling in where I fall short.

I’m thankful I have a partner to help me deal with my MS. I couldn’t do it alone. When people compliment the way I live my life, it feels good. I work very hard at it. But I think to myself, you should see the other guy. So I tell them about my amazing husband, my partner, my caregiver. I want to acknowledge him and all he does. He’s always working behind the scenes, making me appear more powerful than I am.

My MS Lately

I’ve been on a hiatus. Truth is, I haven’t been feeling very well. I’ve been hiding out. Not from others, or from the reality of my illness, but perhaps from the feelings that can take me to bad places.

My disease is progressive. So far, it’s only gotten worse. My doctor acknowledges the course of my MS. She says it’s slow, at least. And this is true. So, there’s that. It’s gnawing away at me so slowly, but with a level of persistence that is terrifying. My doctor speaks of a plateau that could exist; a comfortable place where my disease decides to stay for a while. Take a break, I think. You’ve been working so hard to destroy me. Even a short rest sounds so lovely to me, but entirely unimaginable. My disease has been progressing for over a decade. Why stop now? Giving up is weak, and this disease is fierce.

Every time I’ve sat down to write in the past few months, what comes out is so negative. A reflection of how I feel. I don’t want to promote it, but it’s not fair to hide it either. It’s not fair to deny the downs that I can experience, the emotional and physical pain that all people with MS can experience. In reality, I’m a positive person. But my life with MS is very difficult and I don’t have to hide it.

I always want my words to be helpful and meaningful for others affected by MS. And I haven’t felt that anything I was writing would accomplish this goal. Then I finally found the purpose in my sharing how I feel. I’m sharing how I’ve been feeling, not because someone wants to read that I’m having a hard time, or to bring down others, but because maybe it might help someone feel less alone. If you are tired, afraid, frustrated, or feeling lost; I’m right there with you. But I can’t stay long. I’m working on a comeback.

MS Awareness

March is designated the national month of MS awareness and education. As someone who lives with multiple sclerosis, it’s important to me to raise awareness of this disease. While I am able to adapt, to live well despite MS, it remains the biggest struggle in my life. I won’t pretend that a day goes by where I am not compromised physically or emotionally because of MS.

Raising awareness is important to secure funds for research. It’s important as people with MS continue to seek acceptance and understanding, and freedom from discrimination. Awareness is key to ensure we have access to the care we need, and can live without fear of being denied treatment because we can’t afford it. As someone living with MS, I feel it is my duty to raise awareness. I do so by sharing my story, by participating in fundraising efforts, and by giving my time and support to MS nonprofits.

Through these efforts I feel that I’m doing my part to work toward the ultimate goal of ending MS. But it also gives me a sense of community. I am able to exist among my peers. I can connect with others who can directly relate to me. And I feel comforted by these connections. I’m not alone, because we are all in this fight together.

The Love of a Good Puppy

I’m an animal lover. I’ve got two cats and a dog. They are my kids. I got my dog just before I turned 21 years old. She’s an English Springer Spaniel and I named her Sydney.

She was just a puppy when I got her. I was living alone and just under two years into life with my multiple sclerosis diagnosis. It was still a time of major adjustment for me. She’s provided me with companionship that was so critical when I was on my own. For a long time, Sydney’s was the first face I saw every morning when I woke and the last face I saw when I went to sleep at night.

Pets can provide not only companionship for people, but they also can be therapeutic. Anytime I feel down, there is this loving creature to cheer me up. Pets give us someone to take care of, a responsibility I needed during those years when I struggled through depression trying to find myself after being diagnosed with MS.

Sydney is 14 years old now. Those years have gone by fast. Overall, she’s not had any significant health problems. But she shows her age in her gray hair, a few small fatty tumors, and her hearing problems. The great part is, that despite her age, she still runs around with excitement and is playful. Sometimes it’s like she is still just a young pup.

Lately, she’s having more problems moving around. We can treat that with pain medication and anti-inflammatory medications. But she’s also losing control of her bowels. It’s as if she doesn’t know it’s happening until it’s too late. Unfortunately, there isn’t a lot we can do for this problem. The underlying cause could be her mobility issues or it could be neurological. The medications she’s taking may help, but they may not. Being the kind of person I am, I’ve done my own research and found some alternative treatment options like acupuncture and chiropractic. So I’m hopeful.

Sydney and one of the cats a couple weeks ago.

Sydney and one of the cats a couple weeks ago.

It’s difficult to watch my friend grow old. It’s hard for me to watch the confusion in her eyes when she realizes she’s gone in the house. She knows it’s wrong, but I suppose her body just won’t listen. And I know how she feels. I know the frustration of knowing what I want my body to do and it not responding. With all Sydney has given me over the years, all the love, companionship, laughs, and joy; what I can try to give her now is understanding. We’ve been through a lot together. Unknowingly, she helped me through some very difficult times in my life. Now, it’s my turn to do the same for her.

Happiness is a warm puppy —Charles M. Schultz

Comments About My Disability Test My Tolerance

For some people multiple sclerosis is an invisible disease, but not for me. I can’t hide it, because I have physical disability. I use several mobility aids including a cane, a device for foot drop, and a mobility scooter. I’m fairly noticeable I suppose. And I get a lot of unwanted attention in the form of comments, stares, and pointing fingers to remind me all the time.

I know that human beings are visual creatures. We are obsessed with appearances. So when people see me they first see features like my hair (because I’ve got so much of it), my face, and my disability, before my other attributes. But what empowers complete strangers to comment on my disability escapes me. I’m really not shocked by it anymore. I expect it. Lately though, I’m losing my tolerance. I don’t think a week goes by when I’m not accosted by some idiot who thinks they are clever.

I attended a work seminar last week. I used my scooter since it took place in a large building surrounded by a large parking lot. Inside, the seminar was held in a big open room with rows of chairs. I parked my scooter at the end of a row and sat down in a chair. Some guy squeezed by my scooter and me, sat down, and asked, “How did you get that chair out of Wal-Mart?”

“Huh?” I replied uncertain if I had heard him right. And then he repeated himself. I then pointed to my scooter and asked him if that was what he was referring to.

“Yes,” he replied. “Not that funny I guess.” I told him I’d add that one to my list. And he responded, “I’m sure you hear a lot.”

So why then? Why does this man, a stranger, make this comment while in the back of his mind he knows it’s off-color? He knows I field far too many comments just like this one.

Notice how the use of a camel in this photo draws attention away from my cane.  Unfortunately, not a viable solution for every day.

Notice how the use of a camel in this photo draws attention away from my cane. Unfortunately, not a viable solution for every day.

A couple months ago I had a work meeting away from my office. Again, I was using my scooter. In attendance were some people I have worked with before, and some were new faces. After the meeting, I said goodbye to the other attendees and exchanged a couple business cards. Then after I said goodbye to a person I had never met before he said, “Nice scoot-scoot.”

“Yeah,” I mumbled, now uncomfortable feeling my disability had been trivialized.

I know this comment wasn’t meant to cause harm, but it did. While it perhaps was meant to be playful, it was demeaning. And this is what I deal with all the time. I have had experiences like this for nearly 10 years now. It started well before the scooter when I first began having gait issues and I was asked if I had a “hitch in my giddy up” or if my feet hurt because of the appearance of my stride. It continued when I started using a cane, when instead of the cane being a visual explanation, I was asked if I was “gimpy”.

If all the people who’ve said things to me over the years could just live in my skin for a bit. See just how thick it has to be to live my life. See what I put up with. See how it feels. I struggle to not let these experiences have a negative impact on my life. I try to find humor and laugh at the audacity of these people, but it gets old. Plain and simple. People have to think about what they are saying to me. They have to be accountable and think about what is coming out of their mouths. Most of the time I don’t respond to the things people say. But am I doing them, or myself, any justice by letting their words go unchallenged?

I hope for a day when these insensitive comments end. Based on my experiences, it can be difficult for me to believe it will ever stop. But I had an encounter that does give me some hope. It took place recently when a four-year old girl engaged me in conversation, examined my cane, and said, “I like your stick.” What a brilliant little girl.

Looking Ahead to Another Year with MS

Early 2013 marked 15 years since my multiple sclerosis diagnosis. I didn’t have a flare this past year. In fact, I’ve only had a mild one in the last decade. I got my annual MRI. No enhanced lesions. Just spots. I can’t say that anything changed dramatically this year. But the progression of my MS is steadfast. Things are happening, but my MS is a slow mover. It gradually comes for me, taking little bits at a time. This past year I felt more fatigue. More drop in my foot. Slower getting around some days. Numbness and tingling for a day or two. Most of the time I feel fairly stable though. One might think that’s not enough. But for me, much of the time, it can be. I’d love to get better, but I desperately don’t want to get worse.

My fear of my MS worsening is strongly fueled by the decline I’ve experienced in the last decade. MS progression terrifies me more than anything in life. I just want it to stop. It would be nice to get better, but it can be difficult for me to imagine this as a potential reality. Reverse the damage? A cure? When I was diagnosed doctors and researchers were telling people they expected a cure within 5 to 10 years. Five years later the same thing was being said, and even now. It’s painful to hang on those words that haven’t come to fruition in the nearly 16 years I’ve been living with this diagnosis. So what I think about most days is just holding on to what I’ve got.

Thinking bigger, I do have a lot on my wish list for the new year. I want options to manage more of my symptoms. I want safer, more effective treatments for progressive MS. I want to be stable. But my true wish, the one that enters my mind and stings my eyes with tears, that wish is that someday I can live free of this disease. It all goes away, and I get everything back. I can live without all the drugs and devices I use now to get by each day. I am whole, and don’t live in fear. That is what I want for me, for everyone with MS, for everyone who loves someone with MS. I’ve heard it said in movies; It’s good to want things. Here’s to wanting it all and having hope that someday soon, it can happen.

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MS Drug Risks

FDA investigating case of progressive multifocal leukoencephalopathy (PML) in person who was taking Gilenya. Great. Here we go again. That was my first reaction to that news since I take Gilenya. And because I spent nearly three years on Tysabri fearing PML. I have never been tested for the JC virus that reactivates in people with suppressed immune systems causing the development of PML. When I decided to stop taking Tysabri, I did it because I didn’t feel it was working for me. I continued to have progression. But I’d be lying if I said that the risk of PML wasn’t a factor as well. Since my decision was made, I didn’t feel the need to be tested for the virus. Now I want the test. It’s probaby better to know.

At this point, we don’t know what part Gilenya played in this case of PML. The information released so far notes that the patient was on other immunosuppressant drugs before starting Gilenya, had multiple courses of steroids prior to starting and while taking Gilenya, and may have had lesions atypical of MS on their MRI. So I’ll wait for more information to come out. Read more about the case in this article.

The question I’m always asking myself with my MS meds, is how much risk am I willing to accept? I accept the risk of seizure with Ampyra. I accept the risks of heart problems, eye problems, and infections with Gilenya. Now will I need to add PML to that list? Weighing the risks of my medications versus the risks of my MS progressing isn’t that easy.

What I do know for now is that I fear MS more. I’ve experienced what it can take away. But some drugs with less severe side effects would be nice. I have enough to worry about.

Knowing Your Limitations

Do you know your limits? Everyone has them for one reason or another. Multiple Sclerosis limits my ability to do what has become quite a long list of tasks. I know what those things include. I can’t run from someone if they chased me. I can’t walk around the block, even with my cane. I can’t close my eyes while standing and not fall over. I could go on, adding all types of actions that I can’t accomplish because of MS.

Knowing your limitations is quite different. After over 15 years with MS, I’m still struggling to come to terms with mine. As I sit here writing this post, I am at home on a regular work day nursing several cuts, scrapes, and sore muscles. Why? Because as I was leaving for work I noticed the garbage can. It smelled. It’s garbage day. So, I thought, I’ll just take it to the curb. It has wheels. And as I wheeled it down my sloped driveway I went down with it landing on the pavement. I scratched up my elbow, my knee, my ankle. Since it’s the morning when I have more energy I was able to get up. I was able to put the can upright. I slowly walked up the driveway and into the house.

I wanted to go into work early today. I was off to a great start too. But now I was bloody, in pain, and in tears from defeat. One bad choice had changed the direction of my day. What did I think I was doing? Answer: What any normal person would do on garbage day; take out the garbage. The flaw in my thinking was not first asking if this was something that I should be doing.

In all honesty, it did cross my mind. Briefly and then the thought departed. The part of me who wants to do regular daily tasks without care just did it. And that’s where the problem lies. I might know what my limitations are, but do I always accept them? Clearly not.

Cleaning and dressing my wounds, I engaged in a couple hours of self-loathing. Ridiculing myself for bad choices. But if you think it’s easy to give in, to admit your inability to do something, it’s not. It may be, for me, one of the most difficult parts of having Multiple Sclerosis. I just want to go. I just want to do. I don’t want anything in my way.

I’ve adapted in so many ways to live a life with MS. Clearly I should be able to make this adjustment as well. I pledge to keep trying.

MS Anniversary

I was diagnosed with Multiple Sclerosis 15 years ago as of February. The anniversary of my diagnosis came and went without my notice. It was so insignificant that I’m only now writing about it in May. It wasn’t until I was reflecting on my life overall the other day that I did the math.

When I was first diagnosed with MS, I kept track of the extact day I received the news. Now I just remember it was in February of 1998. I had just graduated from high school the summer before. I had my whole life ahead of me, and then came my MS. I spent the next couple years quite a mess dealing with my diagnosis in the form of clinical depression and irratic behavior. It wasn’t much fun. But then one day, I got on with my life.

I began going to college full time at 21. I graduated with an associate’s degree and transferred to a four year school. After a couple more years I had a bachelor’s degree and a career. Had someone told me back in 1998 that I would have these things in my future I would have thought they were lying. A few years later I got married and started working on my master’s degree. When my husband and I decided we wanted to move, I started to search for jobs in other states. After some interviews I found one and off we went. We made one more big move a couple years ago and settled where we are now, in Las Vegas. Last year we bought a house.

Nothing has been easy in my life with MS. I’ve had to work really hard at everything. There are many things I can’t do anymore that I miss. I miss riding a bike and walking my dog. Did I want to be using a cane before 30? No. Am I happy to report that I drive a minivan to cart around my mobility scooter? Of course not. But at least my van is fully loaded.

Human beings are amazingly adaptive creatures. We find a way. I’m thankful I found the courage to get on with living. I spent too much time dwelling on my worst fears about this disease. Some of them have actually happened, but the whole point is that 15 years after my diagnosis; I have everything I ever wanted. I have a great family, good friends, I’m married to the man of my dreams, we live in our own beautiful house, and like our jobs. I can’t say that MS has robbed me. In spite of it all I can’t say that I’ve missed out on some big part of life because of it.

Despite the happiness in my life there are still times when I mourn what I’ve lost. I think that is normal. It would be unfair to deny that I don’t ever feel anguish from having this disease. There are moments when sadness overcomes me when I think about the things I once took for granted that I can’t do anymore. There are times when I think of the person I used to be and I want to hold her and I want to whisper; I miss you.

Things I’ve Done Since I was Diagnosed with Multiple Sclerosis

I started making a list of some things I’ve done since I was diagnosed with Multiple Sclerosis. When I showed the list to my husband and told him I wanted to post it on my blog he said, these are cool things but make sure it doesn’t seem like you are trying to brag. Then I was worried; of course that wasn’t my intent.

So I thought about why I was making the list. I realized that I made it because I’m proud of myself. After I was diagnosed with MS I spent two years struggling with depression while trying to come to terms with my situation. It was the most difficult time in my life. I’m so grateful that I made it out of that dark place.

The purpose of this list is two-fold. For me, because I can be my harshest critic. I sometimes feel like I should be able to do anything and it’s hard at times to cope with my limitations. This list shows me that I’ve done some awesome things despite living with MS. The second is for others. I want everyone with MS to know that they can live a happy and fulfilling life. I want others to stay out of the dark place and live with me in the light.

So here goes. Since I was diagnosed with MS I’ve…

Graduated from college three times
Lived on my own
Got a dog
Found several jobs
Received a promotion at work
Swam in the ocean
Got married
Traveled to other countries
Adopted two cats
Rode in a helicopter
Visited four national parks
Traveled alone for business and pleasure
Went camping
Moved to two different states
Bought a house
Saw a humpback whale in Mexico
Jumped off a boat into a lake
Watched the sun rise and set in the Grand Canyon
(This spot reserved for the future)

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