May 9th, 2025 was the last day that I said I’ll see you again to my aunt. She’s 73 years old, so young to leave this earth, yet God called her home.
She was the aunt that was involved in our lives in a major way. She and my mom were best friends, they did a lot together. It just didn’t seem fair to let her go. She had vascular dementia. It progressed pretty rapidly, she also had two strokes. One she survived and the other one sent her on her way to Heaven’s gate. She will be greatly missed.
I’ve never helped plan a funeral before. I’ve offered my two cents when my Grandma Catherine passed away but that’s the closest I ever got involved. I didn’t realize the toll that it takes on your mind and for us MSer’s, our bodies.
Last week was the most difficult week of my life. I had the funeral home with my parents twice last week, one to begin arrangements and the second was the last time we got to see the shell of her. She looked like she was sleeping. Between all of that the end of year meetings with the school and my son that has Autism was being bullied that resulted in Thursday and Friday drama that I simply didn’t have the strength for.
I wanted a way out! My body began to start having pain. I was beginning to have spasms, my fatigue increased, speech was slightly affected and I started dropping stuff AGAIN!
It’s true that stress and apparently deep sadness of grief can trigger MS symptoms. How do you mourn without creating flare ups? I feel like more and more MS just isn’t fair. I don’t want it to rule my life but MS surely has its way of popping in uninvited.
If you are grieving a loss, my heart goes out to whoever reads this post. I pray your hearts be lifted and that you don’t suffer with symptoms for too long if you’re experiencing them. People always try to tell us to try not to stress out, it’s not good for you. It’s almost comical. Sometimes life sends unexpected curve balls and I’m here to tell you sometimes we just have to strike out and that’s ok. We will make a home run next time we’re up to bat.
Stay strong in the fight my MS family. Stay strong.
The more I live out this new life with MS, I’m noticing that I’m having difficulty speaking.
I could be expressing myself in conversation and lose what I wanted to say mid-sentence. There are times that in my brain I know exactly what I want to say, I can picture the words, I know what the word I want to say means but I can’t quite remember the word or I do but I literally can’t speak. Then when the word does come I’d randomly stumble through it like a robot. I’ve heard other MSers call it glitching. Honestly that’s really the best way to describe it.
The crazy part is I’ll go right back to speaking normal once I got over that hump of weirdness. It’s the strangest thing I’ve ever experienced. It’s definitely decreased my confidence.
How has this affected me?
I’ve noticed that I’ve become more introverted. I already was a homebody but now this speech problem on top of fatigue is daunting, I have this fear that if I get into a good flow of conversation, I’ll start “glitching” and almost every time I do.
When I do go and do something with people I’m not as talkative as I use to be. I’ve noticed I’ll make excuses to get out of conversations. I’ve started preferring texting over talking, it allows me to give my brain more time to process my thoughts. I noticed I prefer more quiet activities, like listening to music, doing a craft or watching a movie.
I’ve even gotten to where it’s difficult to read a book. I love to read. Sometimes I would read 2-3 books at one time. Now I’m lucky to get through one book without getting exhausted. Part of me might try audiobooks but then another part of me feels like MS has taken something else away from me that I enjoy and that’s difficult to get past but I’m working on it.
I’m not sure why my brain has decided to process like a turtle and it’s messed with my focus, concentration and memory. I’m trying to look past this as defeat and more importantly like an opportunity to modify these changes so that I can continue to thrive.
Since I’m also going through menopause at 43, I had to learn the difference between a hot flash and MS heat intolerance.
Both of them are miserable, both make you feel like crud. Hot flashes are shorter and they make me sweat. Heat intolerance for me is ongoing and you can feel the anxiety creep up because it feels never ending! I don’t break a sweat, I barely get clammy. It feels like fire inside my body that is trying to get out but it’s trapped! I hate it!
I don’t know what brings triggers them, but I knew that I can’t handle them well. I have an ice vest, cooling packs for my neck, little fans that’s plug into my phone, etc. I’ve tried so much. Finally I’m experiencing some relief!
Ember Wave 2
I heard about this Ember Wave for the first time when I was going through my HSA/FSA store trying to find anything desperately to cool me down. At this time I didn’t know I had MS. When I originally saw the product above I was bummed because of the cost. So I didn’t get one.
I was doing my daily scroll through Facebook and came across an ad (no surprise there!) about the Ember Wave 2. I decided to click on it for more information and was hesitant for a few months.
Being a single mom with MS and it caused me to have limited means, the best option for me was to get the ember wave subscription for $20 and for an additional $5 I upgraded to a new one.
The shock on my face after my first night of comfortable sleep.
I got the special watch! I’ve had it so far for 3 nights. When I opened the box I read the details of how to operate it. I already had the APP downloaded. I connected my computer watch and felt the cooling sensation and then the warming sensation.
Of course I was still like, yeah right but I slept with my Ember Wave 2 set on all night cool. It sends you waves of cool through the night to keep your body cool. I was still warm here and there but I slept much better and I didn’t wake up not once in a night sweat like I usually do.
Night two, I wore the wave again, much better sleep. Still got warm but not unbearable and no wet clothes from sweat!! It does say to give it a few weeks to work so I’m looking forward to it because I’ve already seen improvement from night one.
Night 3, I put on one of my favorite pajamas but I usually only wear it around the house because I sweat badly in it!
I was warm in it at night but I did not wake up wet from sweat!!! Y’all as much as my body has a messed up temperature gage, I highly recommend that if you can’t afford one full price, please consider the subscription if you are really suffering. Excuse my hair, but I am at home relaxing and it can turn into a hot mess at times LOL.
Charging the Ember Wave 2
If you are interested in getting one, I have no ties, I wasn’t asked to advertise this by the company but it works and anyone with MS and/or Hot flashes needs this product. Click on the link below, you won’t regret it.
“It’s not you, it’s me.” This is the start of the many breakup letters I’ve written out of my insecurities to my loving boyfriend. I don’t mean it. I never do.
It seems like ever since MS reared its ugly head in my life, my hopes have dwindled and I’ve been consumed with insecurities. I look at him and fear he will leave me. I am afraid to be alone with this horrible disease!
MS hasn’t been nice to me. It’s shaped me into a bitter mess since I found out July 16th 2024. This date now has trauma attached to it. This was the day hope shattered for me. I was broken, completely broken.
This is when the letters of despair began. He doesn’t deserve to be with a girl like me. This is what I’ve been telling myself over the last 5 months. Sometimes I just cry.
I keep telling myself that I feel a distance between us. He’s changed and doesn’t want to really be with me. He’s doesn’t tell me he loves me.
I remember when he use to look at me like I was the most beautiful woman in the world. He always noticed the small things. He use to randomly walk up behind me and wrap his arms around me or reach over and touch me but now, I don’t feel needed, loved, or wanted sometimes. my mind is playing tricks is on me. These are the lies that attack my mind everyday. How do we free ourselves from this mental attack?
When I was journaling yesterday. I was once again, spilling negativity on paper then I cried. I picked up the phone to call my Honey because usually hearing his voice settles me. Everything about him settles me. He answered, and tears fell down my face. I had to hold them back. I cry almost every time he calls me lately. Silent tears roll down my face. If he knew he would think I’ve lost my mind. Some days I think I have.
During phone calls we talk and then during the silence my tears fall and I hold them back so that he doesn’t hear me. It’s been so sad.
The Truth: I Love You, I Need You.
I’ve suddenly became extremely insecure in my relationship. The first downfall was an urgent hysterectomy because my uterus was filled with 34 tumors and blood, so I can’t give the only man I ever loved children, when I wanted to so desperately. Then 4 years later I get diagnosed with MS. I’ve gained weight from depression and exercise intolerance and I simply feel worthless and he most certainly could do better but for right now, he still chooses me.
One the good days, I’m noticing that I have the ability to reflect back on the hard days. I realize how silly I sound. I’m also learning to be ok with sounding like a fool and dumping out the negativity. Then fill my cup with more gratitude.
Today, was that GOOD day. Today, I reflected. I realized that I am loved, he is terrified to say it to me but he told me once before and it was such a powerful moment that even though I wish he would say “I love you” more, that moment he did was enough.
He shows me in so many ways how much he cares, he puts in time and dedication when I’m not around searching for car parts and learning how to fix cars when I have car trouble. He has helped me through difficulties, When he wraps his arms around me, I can feel his love pour into my soul. His hugs heal me. I could stay in his arms for the rest of my lifetime and be satisfied.
Wrap your arms around your spouse or significant other and just stay in that moment for 2-5 minutes. It will help you. I will blog about healing hugs in the near future.
I’m not quite at the point to share my feelings with him when I have the days I want to throw in the towel. I’m working on that. Communicating my feelings make me feel so vulnerable. If you have a great relationship where you can share your emotions, do it. You may get the support you need from your partner.
Touch, is a powerful, healing love language.
What I’m Learning
Although I am newly diagnosed, I am learning that MS is an emotional roller coaster. Depression just hits you. We’re angry, helpless at times, our pride is shattered and it hurts to reminisce about the old times, because in those moments you remember all the things you were capable of doing. It’s hard. It hurts, it’s real.
Find an outlet my friends. I make crafts, I pray, I journal, I listen to music that lifts my spirits, I take care of my plants. My outlets might not be what you enjoy however find something. Counseling isn’t something that you should be embarrassed about. It’s a safe place to share how you feel. Having MS is expensive, I understand that we might not have money to go to counseling, that’s ok too, you are not alone. Find an MS support group, talk with your pastor or find a friend that you can trust.
Find your way. Even when we don’t feel like there is hope, trust me, that small light at the end of the tunnel is yours. Walk towards it through the pain. Trust me you’ll make it. Just keep going my friends.
This is my first time having the flu diagnosed with MS. The funny thing about it (well,not really) I’ve been in a flare and while I was going to steroid infusions I started to feel like maybe I was catching a cold or that it could be sinuses.
Then out of nowhere like a Mac truck it hit me so hard and I was having issues walking, breathing and extremely fatigued. I was delirious and barely holding on.
I can’t speak for everyone’s MS but I know for me, fatigue is something I battle with almost daily. I also get frustrated and sick of things happening to me that lately I’ve been wanting a timeline for every crazy thing that happens to me.
I found some helpful tips to help count down the days of the flu on the CBHA website and I figured I would share them here.
Even though it’s not a fix all hopefully it can be some sort of guide to hope of feeling better.
I hope whoever reads this feels better soon, drink lots of fluids, try to eat and hang in there, we got this!! Even when we feel like we don’t. Keep fighting and don’t give up.
I got into my car this morning and my oil light was on. Since I recently had an oil change I figured I’d go back to where I went to get it topped off and looked into. Sure enough the oil was low.
The mechanic let me know that the seals in my car were leaking and need to be changedI asked her what did that mean and she kind of got a little snippy and let me know she isn’t a car mechanic that she does oil changes. I looked at her and said “Don’t yell at me, I have MS and I just don’t feel good today.” Then like an idiot I proceeded to break down and cry.
I apologized and a look of empathy came over her face and she kindly explained everything. She then topped off my oil and gave the information to a mechanic that can fix the situation. I was so embarrassed, she probably wasn’t even yelling at me.
Once I got my oil topped off so went to head into work. Not feeling 100% after 5 days of steroid infusions and now a cold. I’m suddenly just in this sad state of mind. Out of nowhere I’m sobbing!
I was diagnosed back in July of 2024. It’s been 4 months and I’m still trying to process this situation without thinking why me?
I never felt more alone and distant in a crowd of people. I smile but it’s empty. I look in the mirror and my eyes are empty. I’m always in pain, my body is doing all this weird stuff at odd times and I’m full of fear that I’ll be alone.
It’s embarrassing when you have to have your kids help you in and out of the bathroom, to stand up, to do everything. My house is filthy because I’m too sick to clean it and it makes me look lazy when everything in me wants to do but I just can’t!
I’m over this new normal already. Every day is becoming more and more of a struggle. I’m trying to keep my cup full of positivity as desperately as I can but even that is getting tough.
I want to be an advocate, I want to be advocated for. No one close to me is trying to support me with doctor’s visits or even learn the disease. I’m alone here, drowning! When I just want to be held and listened too. I’m so sad.
I found these two fun facts on the internet. I decided to post them here in my blog because they resonate with me in a lot of ways.
I feel like I spend more time trying to explain how sick I am because on the outside I seem to look perfectly fine. Even when I am having trouble with walking, I get the stares, the questions, or how I’m too young to need a mobile aid to help me.
On the outside you see strength, on the inside I am falling to pieces. Sometimes my fingers are numb, my feet are burning, my muscles are so tight and spastic. I am constantly in pain. I actually haven’t felt much days without pain in the past 4 years. My muscles have grown weak, I’m always fatigued. I push through my days and crash as soon as I get home. My quality of life has been turned all the way upside down.
I’m alone. Fighting a battle all by myself. Learning alone. I’ve joined some great support groups and found some amazing resources. I would have never thought this is what 43 would be like. I would have never thought that I would be the only one in my family with this awful disease.
It’s a weight, that if the people around us would take the time to stop asking and just hear us, it would ease our distress if you just believe what we are saying isn’t a lie or a cop out to be lazy, we really do have issues.
You just have to open your limited views to see that we are telling the truth.
I woke up this morning like I always do. The last few weeks have been so heavy and I made it through, even though it was extremely difficult.
I deal with feeling lonely, a lot, this is a different type of loneliness where I completely feel abandoned even though I know that I’m not.
The battle of having faith is trying to find the yes in a painful situation. It’s trying to push through and make a decision to persevere when your emotions got you so heavy that your body almost feels paralyzed. It’s when you can actually feel that last bit of hope slipping through your fingers but you decide to hold onto it.
The mustard seed Faith at its finest. Thankfully with Christ, that’s enough.
I woke up this morning heavy hearted, trying to force myself to feel happy. I’m sad, I feel like my life is shattering into pieces. Yet, I opened up this scripture that I shared above.
Consider ( to take into account) it pure joy (the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires), when you face trials of many kinds.
When I was in school, no matter how much I studied or prepared, I never was a fan of tests. I use to get extremely anxious and then as soon as the test came I would forget the answers.
Once I calmed my mind and read each question with intention, then I remembered, I recalled the information. Then I answered them, still not knowing the outcome.
When the test came back to my surprise I passed with flying colors.
This scripture helped me see that I am going through the trial, during a trial you take the time to learn everything about the case that is before you. I’m embracing the diagnosis, even though it’s hard, I’m going to learn what I can and advocate for myself and others, so when the test comes, I may or may not know all the answers but I will persevere.
I will remain strong and trust God in the process.
There have been days that I get in my feelings about all of the issues going on with my health. Some days I have no idea as to why I am surprised and then there are days that I am in my “woe is me”.
I’ve been having strange symptoms for years. I went from being very active to less active over the past four years. I know that I shouldn’t be shocked, I was just hoping for diagnosis that wasn’t as heavy as MS.
I’ve worked in the medical field for 20 + years and my knowledge of MS is extremely vague. This makes me uncomfortable but I can’t really say that I am afraid. I’m learning a lot. I even might have information overload slightly but I’m one of those types of people that need to know everything when it comes to my health.
The hard part about it all, is that I wish I could have a glimpse of the future. I’m a single mom and I worry about being alone more now than what I was before.
I know it sounds silly, but my dreams suddenly went from a loving future with my future husband to what if I can’t walk, who’s going to be there to help me. I went from hoping for a wonderful life with my future husband to will I have a quality of life.
I’ve read the bad and I’ve read the good. I’ve seen people that have trouble walking, some you can’t walk at all and prone that need assistive devices to keep going. I’m realizing that you don’t really know what MS can bring a long the way. I’m choosing to be hopeful, yet prepared.
After my first round of infusion steroids, each day felt harder and harder. I was fatigued and didn’t feel good. Then each day had started to get a little better. My back started hurting less, I’ve had to use a cane and electric wheelchair. Mostly the cane.
I’ve noticed that I’ve been making slow progress. I’m still using the cane but off and on. My back hurts worse when I don’t use it but I have days I try to go without it (yes, I pay for it the next day, LOL). I don’t like it. I’d be lying if I said that I didn’t feel embarrassed sometimes, especially with my family. I’m just happy that I am progressing little by little and I’m learning to celebrate the small wins.
I have to remind myself on difficult days, that God’s promise of a perfect life is only in heaven. The expectation of life on earth is filled with tragedy, disease,sadness, hatred etc.
He will give us strength, joy, peace, love, etc. it’s how we choose to accept what we can’t change and lean on the Lord for what we can have hope in, a promising future.
So when I wake up stiff, have numbness randomly in my hands or feet, when my legs buckle out and a host of other random pop up symptoms.
As long as I progress, I will fight to have a live a life that thrives with MS.
Multiple sclerosis (MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which comprises the brain, spinal cord, and optic nerves. This essay will delve into the complexities of MS, exploring its causes, symptoms, diagnosis, treatment, and the profound impact it has on the lives of millions worldwide.
The root of MS lies in a malfunctioning immune system. In a healthy individual, the immune system acts as a vigilant guardian, identifying and neutralizing harmful invaders like bacteria and viruses. However, in MS, this intricate defense system turns against the body, mistakenly attacking the myelin sheath, a fatty substance that insulates nerve fibers. This assault leads to inflammation and scarring, disrupting the smooth transmission of nerve impulses throughout the CNS. Imagine the myelin sheath as the protective coating on an electrical wire; damage to this coating disrupts the flow of electrical signals, leading to a range of neurological symptoms.
The clinical presentation of MS is incredibly diverse, often described as a disease of “a thousand faces.” This unpredictability stems from the variable location and severity of myelin damage within the CNS. Some individuals experience mild symptoms, such as numbness or tingling in the limbs, while others face significant mobility challenges, vision problems, and cognitive impairment. Common symptoms include fatigue, muscle weakness, spasticity (muscle stiffness), balance problems, bladder and bowel dysfunction, pain, and emotional changes. The unpredictable nature of these symptoms, which can wax and wane over time, adds another layer of complexity to the lives of those living with MS.
Diagnosing MS can be a challenging endeavor, often resembling a detective’s pursuit of elusive clues. There is no single definitive test; rather, diagnosis relies on a combination of factors, including a thorough neurological examination, medical history review, and specific diagnostic tests. Magnetic resonance imaging (MRI) plays a crucial role, allowing physicians to visualize lesions, areas of inflammation and scarring, within the CNS. Other tests, such as cerebrospinal fluid analysis and evoked potential tests, provide further evidence to support the diagnosis.
While there is currently no cure for MS, significant strides have been made in managing the disease and improving the quality of life for those affected. Treatment strategies typically focus on three key areas: managing relapses, modifying the disease course, and providing symptomatic relief.
Relapses, also known as exacerbations, are periods of new or worsening symptoms. These acute episodes are often treated with high doses of corticosteroids, which help to reduce inflammation and shorten the relapse duration. Disease-modifying therapies (DMTs) represent a cornerstone of MS management. These medications work by modulating the immune system, aiming to reduce the frequency and severity of relapses and slow down the progression of disability. Over the past few decades, the landscape of DMTs has expanded significantly, offering individuals with MS a wider range of treatment options with varying mechanisms of action and routes of administration.
Beyond managing relapses and modifying the disease course, addressing the myriad symptoms associated with MS is paramount. Physical therapy plays a vital role in maintaining mobility, strength, and balance. Occupational therapy helps individuals adapt to daily living challenges and maintain independence. Medications can alleviate symptoms such as fatigue, spasticity, pain, bladder dysfunction, and depression.
The impact of MS extends far beyond the physical realm, often casting a long shadow on the emotional, social, and financial well-being of individuals and their families. The unpredictable nature of the disease can lead to feelings of uncertainty, anxiety, and fear. The loss of independence and the challenges of navigating daily life with MS can take a toll on relationships and social connections. The financial burden of managing a chronic illness, including the costs of medications, therapies, and assistive devices, can be substantial.
Despite the challenges, it is essential to recognize the resilience and strength of the MS community. Individuals living with MS continue to defy limitations, pursuing their passions, advocating for themselves and others, and inspiring hope through their unwavering spirit. Researchers and clinicians continue to make significant strides in understanding the complexities of MS, developing new treatments, and ultimately striving for a future where a cure is within reach.
In conclusion, multiple sclerosis is a complex and challenging disease that affects individuals in profound ways. While the unpredictable nature of MS can create uncertainty and fear, advancements in treatment and management strategies offer hope for a brighter future. By fostering a deeper understanding of this multifaceted disease, we can better support individuals living with MS, empower them to live full and meaningful lives, and continue to push the boundaries of research in pursuit of a cure.
Happily Ever Amber 