School and Multiple Sclerosis

I thought this was an ideal time to write this post. I am so fortunate to have the opportunities that I have and sometimes I wonder if I am making the most of every resource that I have.

Any who, I just graduated from my Undergraduate program, and I won’t lie, it has been a journey- a challenging one but a content one. I experienced a lot of symptoms during my junior year of college and it was not until senior year that I was diagnosed so I only really had a year’s experience to document post diagnosis. Based on my experience the following are some recommendations I have for patients who are trying to manage their health and school:

Connect with Your School’s Disability Service
If you realize there are some accommodations that need to be made to your schedule or surroundings, don’t waste any time in connecting with a staff member from your school’s disability services to ensure the issues are taken care of before the first day of classes.

Talk to Your Professors

Your chronic illness or disability is your business, and you do not need to disclose any of your medical information to your professors. However, it is your professor’s job to educate you. If you need accommodations, it will help you both succeed if they know in advance that you might need extra time on tests, that you might need an extension on assignments, that you have to use a distraction-free room for tests or whatever else it might be to ensure your success in school.

Talk to Your Teammates

If your program includes an intensive load of group work then I recommend you communicate it with your teammates if you are comfortable. In each class team work was heavily graded in my program so I decided to let my team know ahead of time so they didn’t think I was making an excuse when I couldn’t show up, and when I wasn’t putting in the work I was supposed to, then I expected to be called out because that’s where accountability lies. 

Get Familiar with Your Surroundings

Being in an unfamiliar place can make many students with chronic illnesses feel uneasy. When you don’t know where to find the nearest bathroom or your math class requires you to climb a few flights of stairs, anxiety can kick in. You can set yourself up for success by taking some time to become familiar with your surroundings before classes start.

Visit all the places you’ll need to access during the semester, including classroom buildings, labs, libraries, and the cafeteria. Similarly, navigate each space until you become familiar with the best route or option for you. Taking the time to do this will mean you’ll feel more ready (and less anxious) for your first day. Thanks to Ms. Rona I have taken virtual classes since March 2020 so I was never on campus. 

Don’t Worry About the Stigma

When you have a chronic illness, you feel fatigue, pain and other debilitating symptoms that can make getting around a campus difficult. College campuses are usually huge. Even when they’re small, they’re big for people who don’t have a lot of energy to spare. Whether it’s a community college or a university campus, you have a lot of ground to cover, which is hard if you are chronically ill.

Don’t Procrastinate

Stay ahead of your assignments. As students there’s a tendency of leaving things till the end but it is best to get assignments done as soon as they’re available because you don’t know when you might experience a flare up or symptoms. This is something that I had to personally implement after a couple of close calls. 

Know Your Limits

It’s easy to forget what the priority is when pursuing your degree. You might feel pressured to graduate at the same time as your peers, to be involved in clubs or organizations and to maintain an exciting social life.

At first, it might seem manageable to take on a heavy course load and to become a part of a lot of clubs. But the demands of all of those credit hours and responsibilities will take a toll on your chronically ill body.

So fellas do not stress, do your best and I hope you the best! Do not forget to subscribe and let me know if there’s anything else you’d like me to share..

Disease Modifying Therapy…

Disclaimer: I am not a healthcare professional and everything I write in this post is solely from my experience during my diagnosis and research for treatment options.  

“Disease-modifying therapies (DMTs) are treatments that can reduce the activity and progression of multiple sclerosis (MS). They can be useful for both people with relapsing-remitting MS (RMS) and relapses of progressive forms of MS. A relapse is the worsening of symptoms and/or the appearance of new ones, which last at least 24 hours and are separated from a previous relapse by at least one month.” Link   

Due to the placements of my lesions throughout my central nervous system, I was advised for a high efficacy therapy; however, my options were limited due to testing positive for JC virus which may cause PML upon taking certain medications.  

My options were Aubagio (Teriflunomide) or Ocrevus (ocrelizumab). Since the Neurologist I see is part of a research facility, I was recommended to participate in one of the studies that the practice was conducting to compare Aubagio with a BTK inhibitor study drug. The two studies at the time had different limitations and the deciding factor comes down to a personal preference. After consulting with my family and my PCP, I decided to go with one of the studies.  

All studies come with specific guidelines and these differ based on various components of the chemical ingredients, in my case one study was longer than the other, the bottom line was the length of the study because one study was about 200 weeks long and another 96 weeks, so I decided to go for the 96 week study out of which I have completed 41 weeks – almost half way there..   

I am enrolled in a Phase III, multicenter, randomized, parallel group, double-blind, double-dummy, active-controlled study of Evobrutinib with an active control Teriflunomide. The study has its pros and cons and limitations but at this time, as follows:  

Pros: 

  • Because it is a comparison, you are getting a newer and improved treatment for a disease before it is available to everyone. 
  • You are playing a more active role in your own health care. 
  • Researchers are providing you with medical care and more frequent health check-ups as part of your treatment. 
  • You may have the chance to help others get a better treatment for their health problems in the future. 
  • You may be able to get information about support groups and resources since.  

Cons:  

  • The new treatment may cause serious side effects or be uncomfortable. 
  • The new treatment may not work, or it may not be better than the standard treatment. 
  • You may NOT be part of the treatment group (or experimental group) that gets the new treatment—for example, a new drug or device. Instead, you may be part of the control group, which means you get the standard treatment or a no-treatment placebo. 
  • The clinical trial could inconvenience you. For example, medical appointments could take a lot of time. You might need to travel to the study site several times or stay in the hospital. 

Limitations:  

  • No red wine during study period (side note: I crave it sometimes but I can live without it). 
  • No bitter orange, grapefruit, or tropical fruit is allowed.  

It is important for patients to consider their options with their healthcare providers before making any decisions.  

I hope this post was somewhat helpful. Let me know if y’all have any questions!!

Because Science

Hello readers!

The past few weeks have been crazy between work, school, and life but I am happy to report that I have been vaccinated!  

I got my first shot of the Pfizer-BioNTech Vaccine earlier this month, thankfully I only experienced slight arm soreness for a couple of days after the first shot. I got my second shot this week on Wednesday, and the experience this time was different. I experienced fever, chills, body aches, light headedness, and nausea.  

If you are scheduled for your second shot soon, I recommend you to clear your schedule a day after the shot just in case. Hopefully you do not experience my symptoms and get to enjoy your day off but if do, then you are prepared.  

I chose to get vaccinated because I believe in science and I know everyone may not have the same view as I do and that’s fine.. This is my way of protecting my loved ones, the society, and myself. Everyone has a choice- whether to get vaccinated or not, that is your choice. I only hope that you and your family continue to stay safe! 

Take care!

Migraines and Chocolate Cake!

Yikes! Where do I even begin?! As a teen a used to get headaches and migraine onsets every now and then but I didn’t think much of it, I used to pop a Tylenol or Ibuprofen every now and then but didn’t talk to a doctor about it.  

In 2018, while I was working for a Primary Care Provider, the Nurse Practitioner noticed my overuse of Tylenol which prompted a conversation that I may need something else.. After a quick office visit, it was determined that I may have migraines because I had been experiencing a constant headache for about 5 weeks that was worsening with sound, light, and it was causing nausea. The course of action at that point was to start me on preventative medications and pain-relief medication.   

Preventative medications- These types of drugs are taken regularly, often daily, to reduce the severity or frequency of migraines

Pain-relief medications- Also known as acute or abortive treatment, these types of drugs are taken during migraine attacks and are designed to stop symptoms. 

My migraines have gotten worse since then because the triggers are not limited to light or sound, but certain foods as well. I can no longer eat chocolate, I get a migraine upon eating it and I LOVE chocolate cake, which is what prompted me to post this because I gave in and ate a piece of chocolate cake that I baked for a friend. 😐 

Over the past couple of years, I have tried different courses of treatment along with diet (another post coming up) and right now my Neurologist and PCP have managed to have me on a regimen that is helping me manage my migraines; however, I am on three different medications.  

For Prevention I take Aimovig (Calcitonin gene-related peptide (CGRP) monoclonal antibodies) this is a once a month prefilled injection pen and Topamax (Anti-seizure drug), for Pain-relief I take Ubrelvy (oral calcitonin gene-related peptide receptor antagonist), and anti-nausea medication whenever necessary. 

These medications are currently working for me after I tried and failed on other option available. This is just what works for me under the care of my PCP and Neurologist, if you are experiencing severe headaches and sensitivity, please seek professional care to figure out a best course of treatment for you based on your symptoms and history.  

Therapy

Mental health has been something I have struggled with for a while and it has caused many problems that I could have easily overcome, had I sought the help sooner. Since shifting my focus on improving my mental health, I am not only feeling a physical improvement, but also an emotional improvement within myself and the people around me.  

Along with taking medication for a clinical diagnosis of Generalized Anxiety Disorder, I see a therapist who’s been helping me process emotions and how to take control of them. I am learning to talk about my past, trauma, emotions, or other sensitive subjects can be challenging and how that is affecting me.  

I use these skills in my daily life to discuss hard things with my family, friends, and even coworkers. Furthermore, if I know I need to have a particularly hard conversation with someone soon, I can tell my therapist and he can walk me  through how that conversation might go and how I can cope. 

Seeing a therapist, or counselor in a therapeutic relationship gives you an opportunity to explore your thoughts, feelings, and patterns of behavior. It can also help you learn new coping skills and techniques to better manage daily stressors and symptoms associated with your diagnosis. 

I would recommend therapy to anyone who is struggling because it is definitely a game changer..

Get Over It

Hello everyone!! I hope you’re all having a great week so far..  

Disclaimer: This isn’t a MS related post; however, it is a life related post.  

So.. Today is “National Get Over It Day” and if there’s somebody out there that’s struggling, stuck in the past or in a limbo, trust me it isn’t worth your mental health. We’ve all been through it, let’s be honest. I’ve experienced being hung on an ex, I’ve been ghosted more than I’d like to admit, even from the person I least expected.  

Let it go

But today, I ask you  to take back your power and strength because open loops of thoughts take up more bandwidth in our brain, that causes more damage than we realize. Be the #BADASS you are, take control of your situation, let it go, whatever that’s holding you back. Get OVER IT!  

You Are Not Alone!

Happy Monday!!  

I thought I’d share this with anyone who might need it. You are not fighting things alone, look for people around you who can hold you accountable and motivate you to get to where you need to be. Life is unpredictable and uncertain but remember you’re in a phase of life that is preparing you to become a stronger person! 

Earlier I received a voice message from my dear friend- Landon, that was filled with words of encouragement and a reminder that I have a circle of people I can count on instead of isolating myself and fighting alone. He said, “one of the biggest lies we can tell ourselves is that we’re alone” and “you aren’t identified by your circumstances!” These are couple of snippets from the message that I’d like to share. Thank you Lando for making my day! 🙂 

I am encouraged and motivated to overcome my inner struggles and I know YOU CAN do it to! Take a deep breath, shake of the nerves, and continue your journey of life! 

Sunday Night Routine

Happy Monday!!  

I hope you all had a great weekend and are as pumped as I am to start this week… And.. How is it already February? This post was supposed to go out last night; however, this gal fell asleep while working on it (classic me).  

Every Sunday night, I take some time to get ready for the week by prepping my medications (putting them in an organizer) and getting my planner ready with some items that I for sure need to get done this week, and then I always have add-ons through the week.  

The mantra I picked for this week is “Accept what is, let go of what was, and have faith in what will be.” by Sonia Ricotti. I believe that the key to living a mindful life is accepting what is at hand, since there are things you cannot change about a situation, let go and learn from the past, and have faith while you work on your future.  

I’d love to hear about your daily or weekly routine, if you have one as well. 🙂

Journaling..

Hi everyone!!

I used to journal but never consistently so I couldn’t really go back to review my progress. However, in the past few months, I’ve made it a point to journal my thoughts and emotions along with my goals and plans on attaining them using SMART goal setting technique.  

I’ve been using journaling for taking notes for post readings, audios, and videos that I use for personal and professional development. Since I use OneNote, I can easily revisit these notes to remind myself where I am and where I need to be. 

It is a great activity if you’re looking to stay on track while trying to keep your thought in one place.  

Happy weekend folks!!  

Mindfulness

Happy Friday readers!  

I hope you all have had a great week, it has been a busy yet great week on my end. I’ve been meaning to share this post for a while but haven’t come around to putting it together and today just seems right, so here it goes..  

I have been trying to include mindfulness into my daily routine and meditation is one of the things I try to do every day. Yesterday I needed a mental reset and this headspace video was extremely uplifting. I needed to remind myself even when things are not smooth, I must mentally reset to function better.  

I hope you all include some kind of mindful activity during your day that helps you relax, so that you feel good and work towards your goals!! 

Have a great weekend!!