Joni's Journal

My sister, Angie, is my rock. With a five year age difference, we weren’t very close growing up. When I was diagnosed, I was a scared 21-year-old but she was a 16-year-old that showed maturity beyond her years. The day I was diagnosed, my parents didn’t know what to say to her, so they went with nothing.

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.

So when it comes to having bladder issues, especially the frequency in which I go, I have two strikes against me. First, I’m woman — I’ve been told by men that this is why they dislike doing road trips with women — and second, I have MS. Not to mention that from the time I start work until the end of the day there is always a bottle of water in reach. So when it comes to frequency of using the bathroom, my normal is what other people might call “excessive.”

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.

I am a clumsy person. I have been all of my life. However, once I was diagnosed with MS, I forgot that clumsiness was an affliction I’ve suffered with my whole life. I started to solely blame it on my MS.

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!

How I remind myself life is not always about MS

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.

How MS impacted my focus on the important things in life

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!

Like many of us living with MS, I like to stay up to date on what is happening in the MS world. I mostly use the internet, and while there are a number of sites that contain great information about MS, there are 4 sites that I like to use in particular.

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!

Having relapsing MS isn’t only something that I have to live with, but also something that my family and friends have to live with. I have an amazing group of people to help support me during tough times, and it’s only fair that they also help me celebrate my successes.

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.

The most important thing that I’ve learned since being diagnosed with multiple sclerosis is that my life didn’t end when the doctor said, “You have relapsing MS.” After diagnosis, I went through the stages of grief, denial, anger, bargaining and acceptance. But after acceptance, I still thought that life as I knew it was over.

Of course, I’ve had to make some modifications in my life as a result of my diagnosis, but it’s far from over. For a couple of years after diagnosis, I scaled back the amount of activities I took part in. Most of this was due to the fear of not being able to complete what I started. However, as time progressed, I realized that I could do more than what I was limiting myself to.

Now, I’m as active as I was before diagnosis, just in a different way. I know my limits and listen to my body to make sure I don’t over do it. Had I known how to adjust my activities and not just quit them, I would have been able to do so much more for those first couple of years after I was diagnosed. The good news is that now I know, and I can tell all of you not to make the same mistakes I did.

Check back on February 9th for Joni’s next journal entry.

I live alone, so it would be very easy for me not to take my relapsing MS medication. No one would know besides me and eventually maybe my doctor. However, with my friends’ and family’s involvement, it would be impossible for me to get away with that even if I wanted to.

I take my Rebif shots on Sunday, Tuesday, and Thursday. It amazes me how involved my friends are with my medication management. For instance, a few Sundays ago I had some people over for a cook out. As the evening dwindled down, one of my friends asked, “Hey, isn’t it shot night?”

On top of having others involved with my medication management, I am also very active in managing it. What helps me to be compliant is building routines. Every Sunday, a group of my friends gets together for dinner and to watch our favorite TV show. I use this weekly gathering as a reminder to restart my shots for the week. I have Pilates class on Tuesdays and Thursdays and also use these classes as a reminder to take my shots that evening.

The biggest thing that keeps me focused is my motivation to keep living my life being as active as I can and for me that means taking my medication as prescribed. It is important for me to continue to find motivation in everything I do, everyday.

Check back on January 26th for Joni’s next journal entry.

As I mentioned, when I learned to ask for help it was such an enlightening moment for me that I decided to try it again.

I’m very fortunate to live very close to two of my friends, Julie and Kevin. As I mentioned earlier, I recently moved and of course was living out of boxes. It’s okay to live like that for a little while, but at some point you just need to unpack. A large part of my move included donating items I was no longer using.

As I unpacked, the pile that needed to be taken to the donation center continued to grow. I could have loaded my car by myself, made the trip to the donation center and then unloaded the car by myself. However, it would have been an all-day event. Using my new found ability to ask for help, I asked Julie and Kevin for assistance. Of course they said “yes” and we were able to complete the task in only two hours.

It was extremely liberating to be able to ask for and accept help from others. I’ve definitely learned that I need to speak up and ask for help. Asking for help has not made me any less of an independent person.