MMN Warrior page - Multifocal Motor Neuropathy

01/11/2024

It’s a privilege when people invite you into their hearts and share their grief and vulnerabilities with you.
I will forever be grateful to Karen and Bill Bell for trusting me to write about their world, their daughter, Becky Bell. ❤️

https://www.indystar.com/story/opinion/2024/11/01/becky-bell-died-pike-high-school-abortion/75962264007/

31/07/2024

I’ve been struggling with how to write about this, but it’s time. This last year has been one of the hardest for me since mom died.
I’ve stumbled, yelled, cried and went through the entire gamut of emotions as I started to feel and see my health decline.
As most of you know, I got sick several months after mom passed away. I’m thankful she never knew about my illness because it would have crushed her, but I crave her unconditional Love. ❤️
Despite dad being a Neurologist, I didn’t say anything about the weakness I was experiencing in my hands, or the huge onset of muscle spasms for months. I was scared.
I finally told him and he did some muscle strength tests on my arms and legs. An appointment with another Neurologist was quickly made.
Based on the tests the ran, dad knew the diagnosis before they told me… ALS (Lou Gehrig’s disease). Thankfully, one blood test threw me into another category - something more rare, but not life-ending.
I have Multifocal Motor Neuropathy, or MMN. Only .08 % of the population in the United States is diagnosed with this disease annually. Luckily me.
To help maintain my strength, I have infusions of IVIG, given intravenously by a nurse. My disease does progress and the medication will only slow it down.

In the past year, the progression of my illness suddenly went downhill very quickly. I went from having my infusions every other week to weekly. That’s 6 hours every week and it leaves me exhausted and usually with a migraine the second or third day after. It takes away two full days each week.

And one year ago, my MMN disease decided to toss me into a new world which I don’t know how to navigate. I haven’t fully digested it, but here it is: I have Multifocal Motor Neuropathy and it has progressed to the point of me being Disabled.

There, I said it. I’m now considered Disabled. And there are a few things I’d like to share with you about this:
* Starting with the picture below, I have checked off every box multiple times, if not more.
* I’m 52 years young and I can’t work anymore.
* It took me 8 months before I could even look at the Social Security Disability application.
* I don’t have to work, but if I wanted to, I’d like the option. That is now taken from me.
* I’ve always been able to earn my own income and now that is taken from me.
* I can barely walk a mile.
* My nurse’s name is Alicia. If you believe to be close to me, please remember that. She’s an important person in my life. (Though tomorrow I get to see Ms Dina and I’m super excited!)
* My kids see a nurse in their house weekly. To them, this is normal… it is NOT normal.
* After almost 5 years, we know who we can rely on to help us on infusion days.
* We also know those now those who say/believe they are close to me, but never ask me about infusion days.
* My fatigue is so bad, I have to pick and choose what things I can do in a day - often missing my kids events.
* I can’t always button my shirts.
* It takes anywhere between 1-4 jabs to get my IV started because my veins are so bad.
* I’m frustrated that I can’t travel like I dreamed we would.
* …and more.

Anyway, it’s the last day of Disability Pride Month (whatever that means), so I decided to share with you how it might feel. Maybe this will allow others to relate and talk about it.
I hope so.
Namaste, friends.

11/06/2024

This past weekend, has been interesting, exciting, drama-filled and very eye-opening… to say the least.
I don’t even think I can wrap it up nicely in just one post… so, it’ll come trickling out, be patient.

It was an extremely DIFFICULT weekend. Ty was out of town and I was alone with the kids. No biggie, but we had an overly packed schedule and our go-to support system could only help so much (which is so very much!!)❤️

It was another soccer tournament weekend for Lily in Bargersville and the boys had a baseball game in between her two games on Saturday.

I had to wake up for Lily’s game on Saturday at 5;45am…we left the house at 6:30. I had the boys stay at Nana’s that night so they could sleep in. They had a great time, as two of their cousins had to say goodbye again on Saturday, and another will be doing the same here too soon! They miss them so much.
😢🫶🏽

Lily and I made it to the fields on time, which was great! But from where I parked in a handicap spot to where her game field was, well, I knew it was too far for me to walk. Luckily, I saw one of the field workers and asked if I could get someone on a golf course to take me to her field.

This was the first time I’ve asked due to my medical condition (MMN). It sucked asking… Why? Because I’m ONLY 52 yrs old and I LOOK like I could run a couple miles. But I knew I couldn’t walk the field that day.

Those drivers on Saturday were so kind! They told me that I should always look for a field Marshall and they would call for a “courtesy ride” for me. I didn’t know this, but that’s what they do and it’s what it’s called.

So, Sunday I do just that …. I found a field Marshall and asked if she could call for a “courtesy ride” for me. The girl, who was lounging in a chair, asked me why. I told her that I couldn’t walk that far and was told to ask for a courtesy ride.

Again, she asked “why do you need it?” I told her to forget it and walked.

My MIL showed up about 10 minutes later… on a golf cart … they offered her a ride. (Ummm..🤷🏽‍♀️)

I almost wish I had a big badge on me that said “hey! I’m really sick!”

But that wouldn’t even fix the ignorant, lazy, nosy field person who judged me by my looks. I look strong and healthy, so I should be able to walk…wish I could!

Well, perfect timing for my appointment with my Neurologist today… as he said “if you look the way you do, you’ll be judged by those who don’t have the intelligence, kindness and Grace to know that you’re asking because you need it. So, don’t fight them, argue with them or give up and walk away, just pull this medical form out of your pocket and look directly at them and say ‘thank you’ and wait for your ride.”

Did I ever say that my doctor is AWESOME?! He always gives me a gentle hug when I leave and tells me he proud of me.


✌🏽🤷🏽‍♀️😢

08/06/2024

Lessons I’ve Had to Learn More Than Once:

1. Not all friendships are meant to last. People that you would’ve called your very best friends, people that you would’ve called in the dead of night in the middle of a storm - those people might just slip from your side. I suppose it’s a side effect of growing up and realizing who you really are. When you think of them - because you will - send them light and love and carry on.

2. Sometimes it really is your fault. Sometimes you have to apologize with a clear, strong voice. Sometimes you have to own up to your part. You might not even know how it even happened (or what). I’ve learned that apologies build bridges that fake smiles and make believe never will.

3. Tacos are acceptable meals for breakfast, lunch, AND dinner. So is cereal.

4. You have to walk away. You’re going to have to feel that courage unfolding in your tummy, and you’re going to have to lace up your sneakers, and you’re going to have to walk away. Walk away from tables that don’t understand you, friendships that don’t serve you, and from love that doesn’t sustain you.

5. Spring always comes. The bad always gets better.

6. If you don’t understand something, figure it out. You are smart and capable and strong and discerning. Research and ask questions and don’t be afraid to look dumb. Because -

7. For every one person that agrees with you, there are twenty that don’t. You will never convince them. Your job is to stand in the truth that you believe is holy and justified. Your job is to stand there as a beacon for the people that can’t.

8. Honesty above everything else. Honesty with yourself and your mom and dad and your kids and your spouse and your friends. Honesty. Even if it hurts and even if it comes out in a whisper. Speak the truth.

9. License your car on time, don’t over pluck your eyebrows, and use a good leave-in conditioner. Wear the swimsuit, stop wearing the crappy shoes, read good books, and pray. You don’t have to drink to have a good time, take long naps, and maybe don’t say yes to bangs. Get your feet and hands dirty, plant flowers, and plan parties for no other reason than to laugh with your favorite people.

10. It’s going to be hard. There will be long nights and long days and sometimes, you’ll even be counting the seconds that tick by. You’ll make it through, though. You’ll always make it through.

02/03/2024

16 years.
16 years ago was a Leap Year, too. Back then, though, I didn’t know what the significance of February 29th would hold for me and my family.
No, 16 years ago I was thinking about how auspicious it was to have our Sangeet on February 29th, a day which only comes around every four years. I was also so excited for March 1st to show its face that year.
Our wedding day. March 1, 2008. Our family and friends celebrated with us.
It was the Absolute. Perfect.Day.

Happy Anniversary to my husband and to us. I mean that from the bottom of my heart.
♥️

But like our anniversary, I will now always recognize February 29th for what it means to me and how it affects all the people I love. You see, February 29th is Rare Disease Awareness Day. Ironically, the creation of Rare Disease Day was in 2008, the year we got married. It plays an integral part in raising international awareness which is diverse , yet united in its purpose. It is observed every year on February 28th, or the 29th on Leap Years, the rarest day of the year.

A little over 4 years ago, I was diagnosed with a rare autoimmune disease. Initially, my diagnosis was ALS, with 3-5 years given ( more like 3!). I was quickly sent on for further evaluation and it was found that I didn’t have ALS, a life-ending disease, but instead a rare disease one notch down from ALS. The “good” news was it wasn’t life-ending, but life-long.

It’s been the hardest road I’ve traveled, by far, but at least I’m still going. And for that I’m thankful.

From the time we got married, our journey was hard and complicated. Starting a family didn’t go as easily as we hoped. But after too many losses, we were blessed with not one baby, but 3! And they are everything to us.

Of course, people don’t enter a marriage thinking about what could go wrong, especially not long into the marriage.
We didn’t, but then I got sick. I wasn’t even 50 yrs old, yet. My kids were 5 and 6 years old. We were just starting to find our way after my mom died, their Nani.

In that time, I’ve learned so much! For instance:
* yes, kids are resilient. Unfortunately, my kids don’t recall mama ever being 100% well. They always remember mama having a nurse. That’s not normal.
* Though kids may have full understanding of a situation, they still get disappointed when they can’t do something because I don’t feel well. This brings on a lot of guilt for me.
* They will say in all sincerity “mama, I know you can’t go to our game/event/whatever, and it’s okay. You rest.” But, dang it. I don’t want them to understand those things and I WANT TO BE THERE FOR THEM.
* I bail. Yes, unless you can be flexible with plans, you may be disappointed in me. The way I feel is day to day, hour by hour.
* I miss out on most things.
* My husband picks up a lot of slack that I can’t do anymore.
* My infusions take So Much out of me and my veins are nonexistent almost.
* I’m susceptible to all other rare things and it’s taking its toll.

I’m drained today. Another infusion day, despite our 16 year anniversary. My Health program must go on…my nurse got here at 10am today, Luckily, it was a one jab day (last week was 5!😬🥺!), dad brought me rice and raitha, though nothing sounds good. My kids came home right after my infusion ended and scurried up to me for kisses and stories of their day. My husband picked up beautiful flowers for me though he knows I haven’t left home in days for any length of time.

No, this wasn’t where I thought we’d be just 16 years into our marriage, but it’s what life has given us. And because of it, we’ve learned to love differently and what it means to be there for another. We’ve learned about life through the kindness of our children and how they handle the impossible with so much grace. We’ve learned through family who shows us that we aren’t alone in this.

We’ve grown. We continue to Love and give Love. And after 16 years, I’m blessed and thankful for those who are mine.❤️

18/02/2024

A mantra is a word or phrase in Sanskrit that is believed to have spiritual powers. Reciting a mantra has various benefits. It releases positive energy from the mind and keeps it free of negative thoughts. A mantra also keeps the chanter’s mind and body relaxed without stress while boosting concen...

15/02/2024

I’m over it…

29/11/2023

29/11/2023

😂😂

15/07/2023

A quick lesson about autoimmune diseases. It takes an average of 3 years and 5 doctors for a person to get a proper diagnosis of an autoimmune disease. I just wish more people understood what an autoimmune disease is. It is not a cold or the flu, you will never get better, and even a nap will not help. Just eating a salad and hitting the gym won’t slim your face or get the pounds off. Sleeping 10 hours doesn’t leave you well rested, ever. Last minute changes in plans because that “just got ran over” feeling never makes appointments, just walks in whenever you aren’t ready. Achy joints and bones, dry skin, breaking hair, mood swings, and depression are just the tip of the iceberg. You are also prone to having multiple autoimmune diseases.
The “put together on the outside”, rarely matches the raging battle on the inside.
I am watching the ones who will take the time to read this entire post and react.
Please, in honor of someone who is fighting POTS, MCAD, Sjogren's, Scleroderma, Hashimoto Disease, Graves disease , Hypothyroidism, Ankylosing Spondylitis, Fibromyalgia, Lupus, Sarcoidosis, Rheumatoid Arthritis, Hepatitis, Raynauld's Syndrome, Diabetes, Mold Illness, Celiac, Crohn’s, Ulcerative Colitis, Pemphigus, Neuropathy, SPS, MS, PBC, Psoriatic Arthritis, CIDP, Alopecia, MMN And GPA .Copy and paste to your page and reply "DONE" on mine.
Unfortunately, most of us know someone fighting against one or more Autoimmune Diseases.
By sharing this we can raise awareness, spread information and increase knowledge about all autoimmune issues until we have cures for all. 🙏🏻 ❤️💙💚💜