The first thing I do is make sure I have someone I can talk to about these feelings. For me, this is my sister. Whenever I need some motivation or a swift kick in the behind to stay on my medicine, I call her. She always has a sympathetic ear and understands that I get fed up with injections sometimes. But then she quickly reminds me why it’s important for me to stay on my medication. She usually starts by saying I’m fortunate to have a medication to take. The DMDs for relapsing MS haven’t even been around for all of my life. Just reminding me of this fact can help me appreciate that I have medication to take. She then reminds me who I take this medication for–the people who are important in my life, my parents, my grandma, my boyfriend, and of course, my sister! But then she reminds me of the most important person I need to stay healthy for–myself. I love that she’s someone I can confide in and get a little motivation from.

Sometimes though, my sister isn’t readily available. In those instances, I turn to Rebif.com and MSLifeLines.com. These websites offer a treasure trove of valuable information, including treatment goals and videos. I often like to go back to Rebif.com and refresh myself on injection technique. Sometimes I use the Rebiject II. If I want to use it, I go to the website and watch the injection technique video again. The videos are also good for those of us who can get out of practice of using proper injection technique.

A while back, I discovered that I’d stopped using proper injection technique. It was something that happened gradually, but I’d slowly forgotten my training. I noticed this issue because I had more bruising than before. I had an opportunity to talk with an MS LifeLines nurse and got another training from her. She then told me about the training videos online that are available for everyone.

I’ve learned over the years that it’s important to stay motivated to help with my overall well-being. The more motivated I am to fight this disease, the harder we all work to fight against disease. My family and friends have been great motivators.

I’ve also learned that it’s okay to say you forgot. There are many resources out there to refresh your memory with information you may have forgotten. And don’t worry, it’s okay to admit that and look it up.

I started by asking myself what I wanted to accomplish at my neurology appointments. I made a list of what I wanted to get from the visit and what I wanted to share. I have my doctor’s appointments every six months, so I had six months to perfect what I call my “business plan.” For me, it became important that I treated every appointment as if it was a business meeting.

At all of my meetings with my boss, I have a set agenda. I start off with an objective as to why we are having the meeting and follow that with key points I want to talk about. I know my doctor’s time is as important and as limited as my boss’s, so I set up my doctor’s appointments the same way. Since I often only have about 10 to 15 minutes of her time, I know I need to provide all of the necessary information in a very concise way.

Now, because my memory isn’t what it used to be, I knew I needed to keep notes in between visits. For this, I use my planner. I carry it with me every day, so it makes the most sense for me to use it, but I do have friends who also use symptom trackers on their smartphones. If I’m having a troubling symptom or something is cropping up, I make sure to track it. It could be something like a headache, or muscle spasms in my foot, but no matter what it is, I make sure I document it.

The weekend prior to my appointment, I will sit down with my planner. I look through my planner for any patterns. For example, I found that I was getting a lot of muscle spasms in my feet at night. I didn’t even realize how frequently I was getting them until I checked my planner. I then set up my business (office visit) plan. So at the top of my plan I put my objective for the visit. Most of the time, it’s just a checkup to see how I’m doing, but every so often there’s something very specific that I want to spend most of my appointment talking with the doctor about. I lay out my paper like this.

6-month follow-up

Discussion points:

* Foot spasms that last for fewer than 2 minutes, but occurring at a rate of about once a week

* I need a refill on my Rebif

* I know that I have gained about 10 pounds since the last visit

* I’m going to be traveling and want to get a letter stating I’ve been prescribed Rebif so I can take it with me through security

Visits are now so much smoother and I don’t feel as rushed or as anxious after my appointments. I know I’ll get to discuss the things that are important to me.

The first time I showed up at my doctor’s appointment with my list, I think she thought it was cute and funny. But since that time, even my doctor has realized how much smoother my appointments go and how much we get to go over. She told me she recommended it for her other patients. She also said she encouraged her patients who suffer from migraines to journal, but didn’t realize the impact it would have on people with other diseases like MS.

I’ve been traveling for work a lot lately. Let’s just say out of the past seven weeks, I’ve only been home for one complete week. So needless to say, I’ve been very busy and feeling a little worn down. The great news is that I have an extremely understanding boyfriend.

A few months ago, my boyfriend, Ryan, and I had planned on taking a few days to get out of town. We weren’t going far, maybe Niagara Falls for a few days. I wanted to book the hotel, but my boyfriend, knowing how sporadic my work has been, said we should wait. It was off-season and we had a good chance of just showing up to a hotel and getting a room.

My work schedule changed and we realized we’d only be able to get away for three days, but we still planned on going. We were going to leave on Saturday and return on Tuesday. That was the plan–until I got off work on Friday. I was just exhausted and knew I wouldn’t be able to pack and leave again, even if it was for a mini-vacation. I was afraid of disappointing Ryan, but I knew it wouldn’t be good for my well-being to travel at that particular time.

I went home and over dinner broke the news to Ryan that I wouldn’t be able to take the road trip. He was super understanding and supportive of the decision. He said that was why he wanted to wait on booking a place to stay. He knew I was overworking my body with my busy schedule.

Instead we had the best kind of vacation. Some people say they’re going to “Porchville,” but it was too cold for that. So I say I went to “Couchville” and used the next three days to rest and recharge my batteries.

In the past I’ve had to cancel with friends, and they have always been super tolerant, but it usually is canceling a trip to the mall or a night out on the town. I’ve never canceled a trip before and felt very disappointed in myself. But Ryan reminded me that we’re in this together and although this is what I would call a large adjustment, it really wasn’t. We still got some time off, and we were able to just relax.

We’ve decided to find ways to make all of our “plans” adjustable, just in case my energy level isn’t up to our original ideas–or his energy level for that matter. People with MS aren’t the only ones who need to make adjustments. We just need to make sure that the people in our lives understand that our “plans” can be unpredictable. It’s what we make of our adjustments that count.

I had to stay in the hospital for a few days for the steroid treatment, and no one wanted to tell her why. Later she revealed that she just heard aunts and uncles whispering, and assumed the worst. When she did visit me in the hospital and found out it was multiple sclerosis, she was relieved. Even though she didn’t know much about MS, she figured it was better than all of the horrible things she was imagining for those first few days.

When I was out of the hospital and staying with my parents for a few days, my sister and I talked more than we ever did before. We had both changed since I’d moved out of the house for a few years, so it was a good time to connect and become the friends we are today.

She noticed how uncomfortable I became when my parents would fuss over me. To me, I was the same person as I was before, just with a diagnosis. So she decided to make it her mission to make me laugh about what I was going through.

We had pamphlets about MS that my neurologist had given to me. My sister would read a possible symptom of MS aloud to me and then find a way to make fun of how I would be with that symptom. I was experiencing
numbness in my limbs, so she got these outrageously high, uncomfortable stilettos out and said that since I couldn’t feel how painful they would be I should wear fabulous shoes. She pointed out not being able to sleep wasn’t a curse, but a wonderful opportunity to get as much studying done as possible. She then flippantly stated, “Hey you have a leg up on your competition at school; this MS is going to make you smart.” As far as forgetfulness she said I could get out of things my parents wanted me to do and blame it on the MS.

One day, months later, I was eating dinner at my parents. My mom wanted me to stop on my way to her house to pick up a specific candle from a specialty store that was located in my neighborhood. I was running late and decided to forgo picking up her candle. During dinner, my mom asked me if I got her candle. I didn’t want to admit that I slept in and was running late, so I hesitated and looked at my sister. Angie in a very serious voice said, “Damn MS…makes her forget everything.” I was so shocked I couldn’t even laugh at first, but once I started laughing, I couldn’t stop. Despite cursing being a big “no-no” in my family, that soon became a catchphrase.

I learned from my sister that it’s okay to laugh about my MS. I just need to find the best part of everyday and if I’m having a hard time with that, I think back to dinner that day and it always makes me smile.

For my co-workers and my patients, this could be an issue, because as a pharmacist, I have to check everything that goes out of the pharmacy. However, the people I work with and I have decided to make it a game and find ways to laugh about it.

To start with, one of my interns started to try putting me on restriction. He would make these little tickets and depending on how long I was there would give me a stack at the beginning of the day. I had to turn in a ticket every time I went to the bathroom. Soon everyone was in on it and throughout any given day, would check to see how many tickets I had left. It evolved to be not only about me and my bladder but we started using this method with others for habits that they had. For example one girl is constantly saying, “Whatever!” So we decided she could have one ticket for every hour she is working. So a six hour shift would net her 6 tickets, and we would laugh at how soon we thought she would run out. Would it be in the first 2 hours or maybe 3? I love that everyone was so understanding about what I go through on a daily basis. Even more, I love that they found a way to adapt it to themselves and turn it into something we can all have fun with.

Through them I’ve learned that you can make every situation fun, it’s all about your perspective and willingness to laugh at yourself.

When I was first diagnosed with multiple sclerosis, my neurologist told me to be careful. She said I may be more prone to falling because of the location of one of my lesions. After she told me this, I was having a conversation with my friends. I told them I may be more prone to falling, so if they noticed me tripping or stumbling when there was nothing to trip or stumble over- that was why. My one friend asked if this was different from the stumbling and falling I did before. I looked at her like I didn’t know what she was talking about. She replied, “Well you already do fall a lot, so could it now be more than before?” I promptly let her know that the stumbling that I was doing had to be because of my MS.

I continued to convince myself that my clumsiness was a new development that came on with my MS. That was until one day when I was visiting my grandma. She was going through old photo albums of me and my cousins from when we were kids. In a lot of the photos, I have scraped up knees and elbows. In a few, I was on crutches. When I commented on it, my grandmother told me that I was a klutzy child, always falling down. I questioned my mom about it and she reinforced what I grandmother said.

I was still in denial that I was clumsy by nature. I mean it has to be my MS. Right? Part of the problems with continually falling is that I will wake up with bruises from a fall from the day before and wonder about them. I somehow am able to forget that I had fallen. One day I was in a store that sells decorative items with my friends, and I tripped over a table. I was so embarrassed that I jumped up and said, “I can’t believe I just fell.” My friend looked at me and said, “Really, you really can’t believe that you just fell?”

The next day at breakfast I had a bruise on my forearm from where I tried to catch myself the day before. Again I repeated my astonishment that I fell. Then I said, “Well it’s probably because of my MS.” My friend Brooke said, “I don’t think your MS made you trip over the table.” I questioned her as to why she would say that and she replied, “Joni, you just need to realize that you are a clumsy person, you always have been, and it isn’t your MS that makes you run into random objects and fall.”

It was then that I realized that I needed to accept that I am not a graceful person with or without MS, and I probably never will be. However, when my friends and I are reminiscing over what we’ve done in the past, I’m always included. Or, at least one of my not so graceful falls is included. And you know what? That’s okay. I’ve accepted it and realize that as long as I’m not seriously hurt, being a klutz is A-OK and not necessarily the fault of my MS. But in all seriousness, please remember that you should always talk to your doctor about any questions or concerns you may have, because what you may be experiencing could very well be the symptom of your MS.

Thanks for reading!

I live with relapsing MS every day of my life. But there are days I just want to enjoy life and not focus on MS. The easiest way for me to “live a day” without MS is to do something that doesn’t have too many limitations for me.

One of my favorite activities is to paint pottery. Many communities have places that have ready made pottery and supplies needed to just paint it and make it your own. My friends and I go to a local store that has a workshop filled with various paints. It’s how we sometimes spend our ‘girl’s days’. I like it because it’s very relaxing. It also works as a stress reliever. Who cares if I mess up on something I’m painting. I’m the only one that knows when it doesn’t turn out right. On top of that, it’s a great place to just chat and catch up with everyone.

I also like to attend live events. It’s great to go to a concert or sporting event and concentrate on what I’m watching as opposed to what I’m going through. I especially enjoy attending sporting events. I know it can be fun to watch from home, but sometimes the clean up afterwards can be a hassle, especially if I’m too tired to do the clean up. Any sporting event will do; it’s the excitement of the game that I’m looking for, mainly because I don’t have time to think of anything else.

I like these events because they are something I do with family and friends. Every time I can spend anytime with them, I am reminded that life is about having happy, healthy relationships, and not always about MS.

Ok, so I’m a control freak. I can admit this, because I’m working everyday on becoming more of a reformed control freak. I used to have to have everything planned down to the hour for every day, every trip, and every assignment. The thing with relapsing MS is that sometimes you can’t really plan so much.

When I was diagnosed, I had to spend a few days in the hospital. Everything I had planned for those few days either went on without me or didn’t happen. And do you know what I realized? I realized that the world as I know it didn’t end because I didn’t get everything I planned, done. However, this is a lesson that I forgot as the years went by and I jumped right back into my over planning with two feet.

I continued to hectically plan my life every day, until about 3 years ago. I was talking to a friend that also has MS. She was telling me how she took an entire day off to spend in bed and recharge. I made a comment about feeling guilty and out of control if I didn’t get to everything I had planned out. She then told me that I shouldn’t over tax myself and I should never feel guilty if I can’t get to everything that I wanted to. She then told me I should just do what I can and be thankful that I could.

I realized that she was right. I had learned this lesson earlier but had forgotten it. I’m only letting myself down when I over plan and under deliver.

So now I still plan, but only the major things. I realize that small things are just that; small things. I shouldn’t overtax myself or stress so much when I don’t get done what I used to be able to do. The important things in life are my health and my family and friends. These people support me day in and day out. Everything else is just “stuff”. I realize that there are a lot of things that are beyond my control and you know what, that’s okay!

The first is the National MS Society‘s website (www.nationalmssociety.org). I really like list of recent news releases and the dates that they were released. I pick the ones that interest me the most. Just one click later I can read the article that pertains to that headline. I also check out my local chapter’s specific website to see what events are coming up in my area.

Another website I visit is MS LifeLines (www.mslifelines.com). I really like to check out the program tab to see what events and guest speakers are going to be in my area. I’ve attended many of these events, and often leave having learned something new, either from the guest speaker or from others at the event that have MS. I also like to look at the archived webevents when there is a topic that is related to what I’m dealing with in my life.

I also like to use search engines like Yahoo, Google or Bing to get up to date news about MS. On some of these, you can sign up and have an email sent to you every day with links to new articles that relate to the phrase you put in. I usually search on the phrase ‘”multiple sclerosis”. The cool thing is some of the articles that pop up are from various newspapers around the country profiling someone with MS. It’s nice to read some others’ stories of hope and determination.

I also use WebMD (www.webmd.com). Using Multiple Sclerosis in the search field, I often can find a wide variety of information.

There is a lot of information available for anyone who wants it. The important part is to keep seeking knowledge!

It doesn’t matter how large (positive results from my latest MRI) or small (completing a project) of a success I have, I like to celebrate it. For me a celebration can be a small dinner party or a weekend away. The most important part of a celebration for me is the people I choose to celebrate with.

Sometimes it may be a personal success that I want to celebrate on my own. In this case, I will often do something that I enjoy such as treating myself to a pedicure or just relaxing outside and reading a book.

For the most part, every day that I can continue to live the way that I want, I consider being a success. I celebrate these days by looking forward to the next one.