#MultipleSclerosis Tumblr posts

  • coffeeharvest
    15.06.2021 - 22 minutes ago

    It’s been about 40 days since my MS relapse started and I’m at the point where I feel like I can safely say I am over the worse of it. I know I must have peaked around the time I had started and was on infusion steroids. I’m currently tapering off prednisone with only two 10mg capsules left.

    Was it worth it to go on prednisone? I honestly don’t know, I don’t know how much worse I would have gotten without it and I honestly don’t know if the side effects were worse than the relapse. I believe I was really lucky and missed food craving part of it, my appetite remained normal. The insomnia was the worst, heart palpitations and shaking, irritable, acne, pretty much the rest of the side effects where in play.

    There were times where it was hard to tell which problems where MS related symptoms and which where prednisone/infusion side effects. Currently my experiences include pressure on my chest (no more MS hug), ulnar nerve pain in my arms and fingers (but my hands do not hurt nearly as bad as they did), legs are shaky and weak (no more pain and numbness, I can walk again), and sporadic brain fog throughout the day (at least I am sleeping at night again).

    Things that I found that help:

    1. Chest pain and MS Hug: Goldenrod salve and/or Arnica Salve relieves the muscle spasms and tightening feeling in my chest. You can find it on Etsy pretty easily (plus it helps support a lot of woman-owned small businesses). All you do is just rub it on the area that needs it - I even used it on my legs when I was getting charley horsed. Just be aware that it does have a shelf life so if your MS is in remission you may want to hold off until you feel a relapse coming on.

    2. Nerve pain/numbness: Any salve or oil that has St. John Wort in it and Feverfew tincture. The effects I experienced with the nerve pain salves were not as significant at the salves mentioned above for the MS hug, but it was noticeable enough to mention it for anyone looking to get some relief from this annoying symptom. I also find peppermint oil/frankincense oil mixtures work with the pins and needles feeling pretty well also - but I knew about that from a previous relapse. My only other word of advice is to not take ibuprofen or over the counter pain relievers for nerve pain - it won’t work and you just be putting another medication in your body that it probably doesn’t need.

    3. Brain fog: Orange zest and peppermint oil! Just put some on your temples and hopefully you will have the same success I have had. There was a significant difference for me within seconds. Just be careful not to use it later in the night if you are already fighting insomnia.

    4. Insomnia/Sleep: I was not quite as successful in this area, but I figured people following the #prednisone tag and #insomnia tag would want to know. Melatonin has always been my go to but I also recommend Hops tincture. You can find Hops flower tinctures on Etsy and I have had success in the past with getting a good nights sleep - unfortunately I think the prednisone was a little stronger! All you do is add like 15 drops of this plant friend to whatever you like to drink and you should be good to go. My only other advice is that wine will not work (I probably shouldn’t have even tried with all the meds and tinctures I’ve been taking - but it was for science….. and well I was desperate to try anything for sleep)

    View Full
  • msfightingbeautyqueen
    14.06.2021 - 8 hours ago

    MENTAL HEALTH x MS - My Current State

    "When life gives you lemons".

    …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 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 to 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 let me take the treatment. The fact that my tears helped made my case stronger -- helped my mom understood how vital it was for me to take it. 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 it. But, she told me to follow public guidelines anyways. Thus, I'm very content with her blessings.

    Fast forward to the summer and 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 = I GOT 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)

    Another year, another day and I'm still here. Overall, my mental health with MS remains the same. It's still here and I can't really do anything about it (other than trying my best to live a healthy lifestyle while following doctor's orders). I'm also grateful that I have an amazing support system that cares about me and checks in on me. At this time, (other than having COVID disappear forever)... I just want a cure to end MS.

    View Full
  • coffeeharvest
    11.06.2021 - 3 days ago

    You know that thing the medical people use to take your blood pressure that squeezes your arm?

    It feels like one of those squeezing my whole torso….. with cactus needles in it.

    #multiple sclerosis#invisible illness#disability#chronic illness#multiplesclerosis#ugh #my hands still hurt #even reading a book or using a tablet hurts #before you ask #no #there isn’t any kind of medication that helps with nerve pain #yes I am using plant allies and essential oils because why not
    View Full
  • coffeeharvest
    09.06.2021 - 5 days ago

    I was wondering why I felt so tired after literally doing nothing all day.

    But then I remembered that my body is in pain and that it’s trying to heal and that is why I’m tired.

    View Full
  • msfightingbeautyqueen
    07.06.2021 - 1 week ago

    MENTAL HEALTH: Pre-MS (PTSD)

    *TRIGGER WARNING: Please note this content contains themes of VIOLENT IMAGERY, TRAUMA, SELF-HARM, and MENTAL HEALTH!* VIEWERS' DISCRETION IS ADVISED.

    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)

    Good2Talk - 1-866-925-5454

    View Full
  • coffeeharvest
    07.06.2021 - 1 week ago

    Personal positivity post: note that this might actually be the euphoria feeling I get after being on IV steroids.

    1. I am thankful that I was able to poop today. No joke, I was concerned.

    2. I slept all night, even though I woke up at 4AM.

    3. Last day of IV treatment - ready to take out this thing that has been in my arm for 5 days.

    4. I have leave to take off from work to recover from this relapse

    5. My children are old enough to help me with things that I can’t do on my own right now (which includes making me coffee).

    6. My legs feel better which means I can wear tights and dresses again instead of pajamas all day.

    7. I was able to keep my vision, vocals, most of my cognitive ability through this relapse. I also didn’t have any falls.

    8. Spiritual renewal, time for prayer, growth and wisdom was provided to me. Any other time my focus would have been on work instead of God and others.

    9. Looking forward to a shower today without needing to worry about the IV.

    10. I’m not better yet, but I accept my limitations and I am thankful for what I can do.

    View Full
  • kendrickavant
    06.06.2021 - 1 week ago

    I'm soooo proud of myself. Computer? #repair #diy BID-ness bio? #Authentic Gratitudes? #Already 🤜🏾🤛🏾🖤♿🤴🏾 #ms #mssociety #mssucks #multiplesclerosis #autoimmunedisease #chronicillness #chronicpain #disabled #disability #handicapped #wheelchair #wellness #Gratitude #Attitude #Authentic #Passion #Purpose #Perspective #grateful #relationships #positive #goals #GratitudeChangesPerspective #keepgoing https://www.instagram.com/p/CPyQKsGDiAP/?utm_medium=tumblr

    View Full
  • ydecelis18
    04.06.2021 - 1 week ago

    How to adrenal floss away your low back pain - https://www.youtube.com/watch?v=EeSEOf3iAtM

    View Full
  • msfightingbeautyqueen
    31.05.2021 - 2 weeks ago

    PHARMACARE & ME

    "I once told one of my friends in class that -- My pageant and life-long platform is to bring awareness to Multiple Sclerosis. If I win a national/international title -- it would also be PHARMACARE."

    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.

    DEAR CANADA, I IMPLORE TO ALL OF YOU FROM COAST TO COAST TO PLEASE CONTACT YOUR LOCAL FEDERAL MEMBERS OF PARLIAMENT (MP) & TELL THEM TO SAY YES TO PHARMACARE!

    View Full