#curems

For the past five years, I have been wondering if there is any progress or signs of hope that indicate a cure... I would say -- not yet (until now). Actually, it began earlier this year on January 2021 when I found out from one of the fellow MS-fighters who sent the news to me via IG. From there, I was intrigued and I had to go to the MS Society of Canada's website and look it up for myself... (because I need receipts). Plus, a part of me felt that it was too good to be true... Anyways, it brought so much great news and excitement to me and my family. I'm so happy that BioNTech is doing research on it.

BioNTech is using their mRNA vaccine technology, (yep, the same one they're using for Pfizer), to treat MULTIPLE SCLEROSIS. I'm not sure how long that has been in the works, but I'm so happy that this is the case. According to the article, researchers are in the early stages of testing it on mice. Based on my understanding, the vaccine has a specialized messenger RNA (called m1Ψ mRNA) coding for MS disease-related autoantigens. This will be used to prevent further MS attacks.

I was so excited and over the moon to hear about this amazing news. I shared it immediately with my family and friends. They were also very excited to hear that the mRNA technology will have another purpose to treat MS. I haven't heard any news regarding their ongoing progress since then. For that, I understand due to the current state with humanity and COVID-19. In terms of this potential MS vaccine -- I am not in a rush to get it. MS is VERY complex and the vaccine needs more time to harness its potential. But, there are also a few questions that came into my mind...

What is their current state of the research?

What inspired BioNTech to use mRNA technology to treat MS?

Do the world leaders and their respective governments know about this endeavour?

Five years later... who knew that I would make it at this point, right?! Like COVID, I also didn't imagine what my ongoing journey would look like. I'm just here taking it day by day while constantly learning how MS can impact us. The fifth year also made me emotional because I came a long way from my journey. I'm healthy and thriving in a safe space with the support I needed while battling this entity.

I didn't know that others would want to hear my story at this time. I feel very responsible and accountable for sharing my story. I hope it gives them insights into what I (and many MS fighters) have to deal with on a daily basis. I don't blame you for being overwhelmed -- battling the unknown is a scary thought and it does scare me from time to time.

I have accepted for what it is and I will continue to fight until doctors and science can find a cure in the meantime. With MS, since it wants to fight me, then I'll bring it. I don't start fights -- I finish them & I promise you that I will finish the fight when there is a cure.

I promise you that I am hanging in there. People tell me all the time to be positive. But, I know that can be annoying and exhausting. (To be honest, I don't blame you. Your feelings and concerns are valid and should be allowed to address them). Hence, I have given myself some days off to relax and unwind with self-care. One example would be my cat (Cindy). I am thankful that Cindy provides herself with a great form as a stress reliever. Her cuteness and majestic self (or being) are what I love about her.

…And MS contains a lot of sour moments where it feels like an eternity. Other times, it may feel like a good day where it can be very rewarding. When it comes to my mental health with Multiple Sclerosis, the battle has and continues to give me a run for my money for the past five years. The learning experience never stops.

So, here's the breakdown of my mental health feat. MS for the past five years:

Year One

The first year contained a lot of uncertainty where my family and I feel very helpless of being unable to do anything about my MS in 2016. It brought a lot of worrisome, confusion and concerns about what the future has in store for me. The bittersweetness of being the only MS fighter in the family felt and (still feels) like I'm alone. I'm happy that no one else in my family has to deal with this. But, it sucks that I can't share it with someone else.

It was also annoying to deal with due to the newly developed symptoms (at the time). The headaches and back pains got me extremely worried to a point about whether or not if I needed a wheelchair in the future.

Although, if you're wondering if there were any good moments that occurred during that year... let's just say that I am thankful that I have a neurologist who believes in my story and wants to be part of my journey. (Thank God for her).

Year Two

Well... the second year was almost the same as the previous year. The only difference is MORE brain lesions appeared on my MRI scans. At that time, I tend to wonder what would happen to my brain had a lot more lesions than expected? I had more questions than answers regarding my condition. Does this mean that I need some kind of treatment to remove my symptoms or even my brain lesions? Part of me thought: "What if I had surgery to remove the lesions in my brain and spinal cord?" (Thinking back now... I knew it would be too risky for doctors to do that. PLUS, I'm not even sure that is a viable option for MS fighters).

Back then, my neurologist was concerned and wanted me to take medication (aka DMTs) to prevent more brain lesions to come inside my brain and spinal cord.

Year Three

It took me a lot to convince my mom to allow me to take the treatment. The fact that my tears helped made my case stronger; helped my mom understand how vital it was for me. I was also at ease because I can have some kind of medication that can help me battle MS and its symptoms.

(Now I know that some of you may be concerned about why I should be asking my mom's permission to get DMT while I'm over 19... Yes, I know I'm over 19 years. But, I was born and raised in a traditional Philippine Household. So, FAMILY IS EVERYTHING! PLUS, my mom has been attending the follow-up appointments with me since day one. Hence, her concerns are valid).

Thankfully, I was able to convince her and let me take it. I was so excited and ready to move forward in this journey. Usually, when we think of medications -- it's usually over the counter, main brands that we usually see. But, in this case with MS -- it means so much more. But first, my neurologist told me to get my bloodwork done to see if I'm ready to take it. Eventually, I passed and I cried when I first saw the parcel, it gave me tears of joy knowing that this can help me make me feel better.

It was exhausting at times when I had to stop taking it. I had experienced some chest pains a few times where it made me and my neurologist concerned. Luckily, my neurologist's solution was for me to have healthy foods and hearty fats. (& it has been working for me ever since).

At the same time, I was also still enrolled in my undergrad and taking the evening course from 7-10pm was exhausting... I had a lot of fatigue and was ready to go to sleep. But, I'm so happy that it was also my LAST evening course because that affected my physical and mental well-being. (In case if you were wondering about my mark -- it was a B).

Year Four

So happy that about 2019-2020 because this was the year that I've completed my undergrad studies where it literally took me SIX YEARS, TWO STRIKES AND A COVID-19 VIRUS. I was involved with campus life activities, work-study and two 6-credit courses. At that time, I was living my best life... UNTIL COVID CAME!

Sadly, I was supposed to visit the Philippines around May 2020, but I wasn't able to. (Plus, my grandmother would be disappointed in me if I didn't follow the health and safety rules). So, having my home under lockdown is just me reminiscing about my childhood upbringing.

At the end of my undergrad, I was able to get all A's and take a break for a year -- because studying can be exhausting. Thankfully, I was able to have a virtual appointment with my neurologist. Despite the current state of my MS condition, I'm at low risk of getting COVID-19. But, she told me to follow public guidelines anyways. Thus, I'm very content with her blessings.

Fast forward to the summer -- I surprisingly got my undergrad degree and certificate framed from York University. The parcel was heavy though... But, my mom was so hyped -- she decided to hang it up on the wall in the living room for everyone to see.

Another good news during the pandemic was GETTING A NEW BED FOR CHRISTMAS! (Thanks mom lol). Yeah, my back has been hurting me for a very long time. Hence, my mom decided to order it. Plus, it gives me one less item to worry about while battling MS.

Year Five (Present Day)

The story that I'm going to share felt like eons ago... But, at the same time, it almost feels like yesterday... As you can tell by the title of today's blog, I'll be discussing my battle with PTSD (also known as Post Traumatic Stress Disorder). Personally, when I first heard of PTSD, I would affiliate it with WAR in the battlegrounds against their enemies. Turns out, that my story is somewhat similar to it, however; who knew that it would take place in my own home.

My story began in 2015-2016 during my second year at York University. It took place during the Winter where it was just another ordinary day at home. An immediate family member called me over to help him with technological problems (as usual) (i.e.: Skype). This problem involved me helping him find one of his cousins and send a friend request. I tried to help, and I told him that his cousin is NOT there. So, he called me over again and he asked me to help him (again)… and I tried. BUT, still no luck... It went to a point where my father was frustrated, angry AND drunk.

He was really pissed off that I was not able to help him. The situation escalated even further when he got up and was about to assault me. I ran away from my parents' room, grabbed my cat (Cindy) immediately and ran inside to my room and locked ourselves in (which was in the basement at the time) and hid there in tears. I was shaken in fear and I did not know what to do. All I wanted to do was run away and move out of the house at this point... and since my home is not soundproof, I can hear him yelling at my mom and telling her what happened. He wanted to leave because I wasn't able to help him with finding his cousin on Skype. (I know, it's pretty petty when you think about it).

From there, I called one of my closest college/university friends and I slowly told her what happened. She was concerned for my safety and asked me if I'm doing okay, do I want to leave the house in the meantime and do I want to press charges? I told her that I was safe for now, but I don't want to leave my home and I don't want to call the authorities. I thanked her for listening to my story and I messaged her afterwards.

The next day was rough... I was able to get a decent amount of sleep, however; I was terrified... I didn't want to be near him due to his actions. So, I just stayed away and ate a little bit of breakfast. As the time went on... I still don't even want to be in my own home and I was constantly living in fear. It was so stressful to a point where I have even lost my own appetite and I had to assure my mom that I was fine. Sometime in November, I decided to check my weight for fun. Sadly, what I didn't expect was the number that I saw. Prior to my PTSD, I was 125 LBS. But, on that day, I was 95 LBS. The stress literally took its toll on my body -- it may me lose 20 lbs and that scared me...

Eventually, I decided to visit my Accessibility Counsellor on campus because I needed her help. I told her the story and she escorted me to book an appointment with the Mental Health and Wellness counsellors. From there, I was able to get my weekly counselling sessions on Fridays and it helped me A LOT! It was fun and was able to heal from my battles. She also told me that I should create a backup plan in case if a similar situation occurs and can potentially trigger my PTSD.

The following appointment was very productive! We were able to discuss my options from moving out to having a small group of people that I can trust. I was very pleased with the results and plan -- I was able to tell my mom and told her that in case if my PTSD returns because of him -- then, I will be with my aunt and cousin. My plan made sense to her because my aunt is my mom's sister and I can trust her and my cousin with my life. My mom told my aunt of how my PTSD began and my backup plan. My aunt had no problems with me spending time with them and I was told that my cousin was devastated by what I had dealt with.

As time went on, my winter semester ended, (along with my weekly counselling appointments). I felt accomplished and happy that I was able to do it during my second year. Sometime during the summer (after I first diagnosed with Multiple Sclerosis), I had a really bad headache that I was trying to endure with all of my strength. It was so bad, I started to cry and eventually, as I was started to walk towards my room -- I nearly fainted and that's when my parents caught me. From there, he finally said sorry and that's when I forgave him while I was in tears.

First off, I want to personally thank you for reading my story. I understand that it is very personal, overwhelming and very triggering. Even though, it wasn't easy recounting the traumatic events -- I felt that I should share my stories on how I first battled my demons prior to my MS journey. So, here's my advice:

Even though, it is your own personal battle... I want you to know that you are NOT alone! PTSD can be scary and there is a group full of people who love and care about you deeply. They are here ready and willing to listen.

You can tell people your story when you're ready. No one is forcing you.

You can also seek counselling when you're ready! Battling PTSD is not easy and it can take its toll.

Have a backup plan and you can discuss it with your inner circle (the group of people that you trust).

If it gets worse, you have the option to report it to the authorities.

RESOURCES:

https://www.camh.ca/en/health-info/mental-illness-and-addiction-index/posttraumatic-stress-disorder

Assaulted Women's Helpline: 1-866-863-0511 (Toll-Free) OR 416-863-0511 (Toronto)

In my previous post (Tecfidera and Me), my neurologist gave me her blessing to let me take the full maintenance dosage in May 2019-2020.

Everything was going GREAT for me UNTIL my 25TH BIRTHDAY. (So, I knew what I was getting myself into when I'm taking Tecfidera). My neurologist also told me early on that Tecfidera was (and still is) VERY expensive. The last time I checked, it costs over $24,000 CAD. I knew that Tecfidera would not affect me physically because I knew I can handle and endure the pain (quietly). My only concern was (and still is) involve FINANCIALS!

I knew that I won't be covered under my mom's private insurance from her work as soon as I turned 25. It was a bittersweet feeling. The good news is: I can finally pay off my own monthly insurance fees. (Mainly, due to the feeling of gaining responsibilities). The bad news is that I feared that the insurance won't be able to fully cover the expenses.

My mom and I discussed it and we both agreed to get her previous insurance company from her work. (Technically, it was a pretty easy decision for me since I grew up watching my parents complete their paperwork for the company's insurance claims). I got in touch with one of the agents on the phone and she was so NICE! She was very helpful and understanding with my situation. She offered me a really good deal with a decent amount of coverage for my health and dental.

Ever since my 25th birthday, my insurance covers 80 percent of my Tecfidera expenses, while the remaining 20 percent was covered under Ontario's Ministry of Health. My neurologist was able to write a letter to the government to help me cover the costs due to my ongoing state with Multiple Sclerosis. (& for that, I am truly grateful!)

Thinking back, I still think about how lucky I am to have coverage from my insurance and the government, HOWEVER; I acknowledge and understand that there are more patients out there with various medical conditions (MS or not) that are struggling to cover the fees of their medical treatments and have no choice to pay out of their own pockets. To me, it is sad and unfair because I live in a country in North America where we have SINGLE-PAYER UNIVERSAL HEALTHCARE! (Thank you former Premier Tommy Douglas of Saskatchewan).

Recently, Bill C-213 (Canada Pharmacare Act) was struck down in Ottawa at the second reading on February 2021. I am sad and disappointed to hear about the outcome. I am wondering how can millions of Canadians pay for their medications? It is long overdue and it is time for Canada to implement Pharmacare and upgrade our nation's healthcare system.