Multiple Sclerosis Awareness

Many of us who live with  symptoms of Multiple Sclerosis are quite aware of it's presence everyday.. 

Right now, this is how aware I am of this disease. My bones hurt so badly. It feels like the pain is from the marrow of my bones radiating outward. This sensation is in addition to the numbness and tingling that is a constant symptom of Multiple Sclerosis for me. 

Also, my feet and hands have been throbbing.

It seems like one of those days I feel this neuropathy in my feet and hands will cause them to explode. They won't but that's one of the extreme sensations I often feel. That feeling may come sooner than later, maybe the symptoms won't get worse, but they're bad enough right now. My teeth are beginning to hurt too. 

I was diagnosed with Multiple Sclerosis. in 1993. In December I celebrated my 65th birthday. I'm really so tired of suffering. MS gets to be quite overwhelming  oftentimes. It is torturous to state it mildly.

I hate the days when what is bad gets worse! Peace and blessings to all.

Multiple Sclerosis Awareness Month is about to end in just a few short days.

In over thirty years of knowingly living with this disease, I have rarely heard about it unless a public figure was unfortunately diagnosed and revealed they had MS.

There have been a few times when people have said they had this horrible disease to steal funds for themselves. If people like that are so low to put a condition like this on their lives to steal, they surely deserve all the misery we endure. OK, well, just a little. I'm not backing off that. What perfect specimens they would be as its willing partners. They did ask for it, right? What a fantastic testimony it would be too.

This MonSter is wicked. It has taken me on a physical and emotional rollercoaster for over 50 years, with 20 of those years being undiagnosed. 

Awareness matters, and with these numbers, MS, Awareness needs to matter to us, especially to those of us who live with the effects of this horrific disease.

There are  nearly 1 million "others" of us living with MS in the US and over 2 million worldwide. 

When our voices need to be heard, think about those numbers, and if we vote, then watch out.

We are all a commodity for the companies that sell the disease modifying drugs to us and make it appear this this disease is an easy one to live with as it seems in many of their advertisements.  Ask me, and anyone I have ever known what this disease really is like.

Over the years, I have met many of us who are living with the compounded effects of balancing everything that "normalcy" is and then MS becoming an additional integral factor in just trying to live with it too.

About 35 years ago I was seriously hurt at work on 2 occasions. Long story, but the infringement of my and other folks rights forced and prompted my fight in advocacy. 

It was then, I began  interjecting my voice in the push to legalize the issues I found important to me. There was the American with Disabilities Act, EEOC complaints, passing the FMLA - Famly and Medical Leave Act, legalization of Medical Marijuana and this long drawn out MS battle that began in 1993 with the final diagnosis of this disease.

The fight for my justice in the workplace along with two other women who were terminated for job related injuries kept me in the fight. I have not yet told that story the way I have needed to because of the long term effects it has caused me. 

I suffer everyday. MS just additionally wears me out as I live with the effects of both. It's either this or that, and still, I'm just trying to live, and now from a wheelchair. Thanks MS!

I do know our fight and our eventual wins kept countless others around the US and it's territories from losing their jobs caused by work  related injuries. Back then, the precedent that would have been set that would have meant job related losses based on as they noted, "unrealibilty to perform the duties of our jobs." This is the extent I will address this issue for now. It's just too much!

Stay strong sisters and brothers. Gods word says "The race is not to the strong or swift, but he who endures to the end."  💕

Multiple Sclerosis Awareness

March is Multiple Sclerosis Awareness Month.

Multiple Sclerosis effects nearly 1 million Americans and 2 million people worldwide. 

I was diagnosed with this MonSter in 1993 but have ĺived with its symptoms for over 50 years. It is an unpredictable disease, and I suffer daily from quite a few of its symptoms. 

Multiple sclerosis causes many different symptoms, including vision loss, pain, fatigue, and impaired coordination. There are nearly 100 symptoms caused by MS. 

THIS IS MS. It's so complicated. MS attacks the brain and spinal cord, and it effects us all differently. Below are just some of the ways it can effect a person.

"The symptoms, severity, and duration can vary from person to person. Pain areas: in the back or eyes

Pain circumstances: can occur in the back due to head nod or with eye movement

Tremor: can occur during precise movements, in the hands, or limbs

Muscular: cramping, difficulty walking, inability to rapidly change motions, involuntary movements, muscle paralysis, muscle rigidity, muscle weakness, problems with coordination, stiff muscles, clumsiness, muscle spasms, or overactive reflexes

Whole body: fatigue, dizziness, heat intolerance, poor balance, or vertigo

Sensory: pins and needles, abnormality of taste, reduced sensation of touch, or uncomfortable tingling and burning

Urinary: excessive urination at night, leaking of urine, persistent urge to urinate, or urinary retention

Visual: blurred vision, double vision, or vision loss

Sexual: erectile dysfunction or sexual dysfunction

Mood: anxiety or mood swings

Speech: difficulty speaking or slurred speech

Also common: constipation, depression, difficulty swallowing, difficulty thinking and understanding, flare, headache, heavy legs, numbness of face, rapid involuntary eye movement, sleep deprivation, tongue numbness, weakness, or difficulty raising the foot."

https://tinyurl.com/yckjw9aa

Do not give MS, this demon we have come to know as multiple sclerosis or anything else the power to kill the gifts you've been blessed with or have developed to add value to you life. I am a jewelry designer who is still determined to give MS a fight to the end. One of the gifts I nurtured honed and developed was the ability to sew and design clothing. MS has taken my love for sewing and creating beauty from a piece of fabric. I am no longer able to use my legs That journey began for me when I was about 11 or 12 years old when the initial symptoms began.. I was diagnosed with MS 24 years ago, and have lived with it's effects since I was about thirteen. My ability to walk and be independent was taken by MS nearly 10 years ago. I will celebrate my 60th birthday later this year. I will always win against this disease because I am determined to protect and nurture

These are a sampling of the MS Collection I have posted on my website at

http://www.icypearljewelry.com/

I am raising the funds needed for stem cell transplantation and a ramp for the front of my home until we can move to more suitable living accommodations.

#CureMS #MultipleSclerosis
#NeverGiveUp!
#ApproveStemCellsfForMS

 

GOOD DAY EVERYONE!

I just had to take a moment to say that I AM GRATEFUL that this today I got up DETERMINED that COMPLETION of something I needed to start or finish would be scratched off a long list of to do's. Sharing this today was on my heart because there is someone that has something they have been needing or wanting to do has been too and has been put off for some reason or another.

My reasons for delays and putting offs are mainly due to this disease. #MultipleSclerosis is a thief of many things physical and at times mental/emotional.  I am grateful that my put offs are seldom the latter. Those who are effected by this illness know all too well how #MS has stolen so many desires and intentions to do and complete their tasks. Today, at least, I will finish a couple. I encourage someone to do the same, especially if your obstacle to do is not as off putting as an illness for which there is no cure. Please include include in your daily prayers that a cure for MS is soon realized and revealed.

Have a blessed, productive and fulfilled day. If the sick can be that witness.....what then can anyone else push for?

 #KEEPONPUSHING #MULTIPLESCLEROSISSUCKS #CUREMS