Being diagnosed with multiple sclerosis (MS) can be unforgettable, and for some, even shocking. For others, it’s a relief to know what is causing their unusual symptoms.
Rachael was diagnosed with MS just over a year ago, after spending years wondering what her unexplained symptoms were. In the past year, she has navigated everyday symptoms and has learned how to manage her MS. Her team at the Penn MS Center has developed a specific treatment course to help Racheal live with MS.
We checked in with Rachael to see how she has been living with her diagnosis. Her strength and optimism has proved living with a condition like MS is not always negative.
Read her guest blog post below.
One year after being diagnosed
Recently, I had my one-year anniversary of being diagnosed with MS. I'm feeling great! This has been the first full year in a long time that I didn't have any crazy symptoms. With the everyday symptoms I do have, at least now I know it’s related to my MS and I’m managing it. It doesn’t make it as hard to deal with when I know I’m receiving care.
This past year has been very enlightening for me and for those around me.
I decided to make the choice to change a few things in my life. I cleaned up my diet and started eating healthier. I now exercise on a regular basis and go for a 2-3 mile hike at least every other week. I started doing acupuncture, reflexology and joined a local meditation group.
Getting a life-changing diagnosis has been hard, but I've found if I manage my overall health and surround myself with positive people and energy it's not that bad.
I’ve also made a career change. My job and my health were always things I stressed about, but now I have a confirmed diagnosis, a treatment plan and a care team, a great job, and a healthier lifestyle.
Struggles managing MS
One of my struggles has been to stay positive on the days that I don't feel well. MS is an invisible disease and many people don't understand what's going on. Getting the constant "you look fine" from people is hard, but it gives me an opportunity to share what MS is and how it affects me.
One struggle I face is the heat, I've come to realize that being out when it's hot and humid is not the best for me. That has been hard because of how active I like to be during the summer. I've found though if I bring my ice water along with a cooling neck wrap or vest it helps me feel better and stay active!
My mom has been an amazing support system for me. On many occasions I've called her on the brink of tears, overwhelmed and upset with how tired I am and how things just aren't the same as before. She calms me down and helps me realize all the positives I have. Some days I don't feel like cooking or doing anything, so I call my mom and tell her I’m on my way over. I've never told her this, but those days are usually my worst days; the days that it’s difficult to do anything but stay in bed and be alone. She makes me feel better– she feeds me dinner, packs me lunch, and never dwells on how I might be feeling down. We don’t even talk about my MS and that’s the best part. I don’t need to explain it to her or tell her that I’m feeling down – she just knows. She just lets me sit out on the hill top enjoying the sunset.
I couldn't have handled this nearly as well without the love and support of my mom!
Sierra (my horse) has continued to be a blessing to me. Taking care of her, forces me to get up every day. I feel bad if I miss a day. She is always happy to see me, greets me with a nudge, and licks my hand. She is a huge motivator for me!
I am not sorry this happened to me. I have answers now and with the help of Penn I'm able to show others that even when you feel alone and feel that no one will listen, someone will. Now my friends see my story and they admire my strength and courage to tell everyone what I have gone through. Recently, I actually did the 5k MuckFest for the MS Society. Afterward, I had a big party at my parents’ house. It was my "I got this" party. I actually had over 50 friends and family attend. It was amazing to see all the support in one room!
Research being done around MS
The research being done for multiple sclerosis is phenomenal! Being diagnosed with MS is no longer the beginning of the end. There are new studies and medications emerging for people with MS and now we have a better chance of living a normal life.
Tips for others recently diagnosed
My best tip for anyone with MS is to stay active and find something that motivates you. Surround yourself with positive people and don't lose hope. It was hard for me to reach out to others with MS at the beginning. But now, I have my family, my friends and my Penn Medicine team, and I also have an MS family. It helps to talk to others who are dealing with the same thing I am. We understand the ups and downs and that has greatly helped. I recommend finding a local support group and go! Going to my first support group was intimidating and hard, but now I look forward to them – it’s an amazing group.
You were selected to participate in the My MS TV Debut
I was selected to participate in the Penn MS Marketing Campaign. What an experience! At first I was overwhelmed and didn’t know what to expect. I was nervous to tell my story publicly. I just kept thinking “everyone is going to know I have MS and what I have to deal with." I found, though, that telling my story was very therapeutic. I didn't have a lot of time to dwell on anything negative. During the process of filming, I think I babbled a lot - I was so nervous! Luckily I had my mom and the team from Penn by my side helping to help ease my nerves.
The photoshoot part with my horse was even more nerve-racking. I wasn't exactly sure how she would handle everything. The shoot with her went smoothly and she, like me, loved all of the attention. Once I saw the finished product I was in awe with my story. I still remember getting the preview of my video. I went right to my mom’s house to watch it because I couldn't watch it by myself! While watching it, I started to tear up. It finally has come full circle: my story about MS. Now it is out there for everyone. Hopefully my story helps others. Being in a marketing campaign was therapeutic, inspiring and truly another life changing experience thanks to Penn.