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March Multiple Sclerosis Awareness Month

MS RibbonI know I promised more book reviews and those are coming. I just know that if you use Facebook and know anyone else with Multiple Sclerosis you may have seen posts stating that March is Multiple Sclerosis Awareness Month. I can honestly say I am not sure if that is a national event, or not, but I want to do my part and bring some awareness to MS.

I have not seen much in the way of awareness being brought to the disease other than those images. I realize at the time I am writing this the month has already started but I’m sure you know by now MS is something I deal with daily and want to get people to understand it more. I also want people to understand it’s not a death sentence, don’t hide, and most importantly NEVER give up.

MS is often called an auto immune disease and there is no known cause. There are theories out there that it could be genetics and environmental factors or even something from an infectious disease. I do know it’s more prevalent for those who live up North where they may not get enough sun. It’s why many doctors push Vitamin D when they are diagnosed.

I personally like to call MS the “Chocolate Store” disease as your average box of chocolates does not hold enough pieces to handle the differences possible with MS. I do believe I read an article sometime back that state there are at least 50 different problems that can lead to a MS diagnosis. So, this is why I believe the “Forrest Gump” analogy of, “Life is like a box of chocolates” doesn’t work here.

When it comes to my personal diagnosis story it started just over 10 years ago. I had just begun a new job and had instances were my arms just started to flex without me doing anything. Flexing is probably the wrong term but my arm muscles would tighten and this forced my arms to bend in toward my chest. I got to say scary and when it happened in the car as I drove to work it was time to get serious. I also had issues with severe cramping like feeling in my legs. I had thought maybe a potassium deficiency but I was wrong.

These problems required me to get all types of medical testing. The hooked up sensors to my scalp, and that glue not fun to get out of your hair. They pushed needles into my arm to test nerve reactions. The final major test that proved everything they thought might be going on was an MRI. I will say I’m not a fan of those and today need some meds to relax me or it is not happening. Either way the results came back there were these white blotches in the MRI results on the brain and even the spine. It was official I had Multiple Sclerosis.

I believe I have shared this in a past writing but I got to say I took the diagnosis in stride. I did not see it as a death sentence. I was told I had relapse remitting which is a type of MS that will come and go and for many of my years I believe I am in remission. The point is I knew I had to be positive that getting down on myself, even contemplating my funeral would not do any good. I had to think of how I want to spend my life, and I decided on staying positive. I am sure family members took the news worse than I did but I hope by staying positive and explaining to them what may or may not happen it helped them.

You see that is why we need an awareness period with MS. It’s sad but as a recent actress showed people hide the fact they have the disease. They are afraid of how people will react, how their employer may react and more importantly their family. I should avoid this analogy but it seems that people are much more willing today to come out as gay, or transgender, than to say they have MS. I realize that statement is a stretch but look around the world is accepting people’s different sexual orientations more and more. However, there is a stigma with disease like MS were people are afraid to admit they have it. I get many reasons on why that could be, but as in anything in life when you have a problem you must admit to it. As for MS I love to say, “I have MS, it does NOT HAVE ME”.

The positivity that you can find by connecting with people with MS through support groups, either online or through MS organizations are huge. They can help you find others in similar situations but not always the same. I did mention my chocolate store analogy for a reason. The key is do not be sorry, upset or give up on anyone who gets a MS diagnosis. The medicine and treatments have come a VERY long way since the disease was first found.

This is also a disease that will hit anyone from race, creed, religion, ethnicity, and celebrity status regardless of who you are. So the key to tell someone with MS is no matter what you think you are not alone and just be their friend. Reach out to those you may know who have the disease and instead of saying sorry ask them how they doing. Even better ask if there is something they want to talk about, do for the day and just be there for them. I for example do NOT want to be treated like I’m made out of eggshells.

You will find people that are ignorant, who say they care, and do not back those words up. I have seen this myself but well I like my job so will not go further. I will say my immediate supervisor, and coworkers, have been very understanding and backup what they say. Now, back to the point, those negative folks need to be cut out of your life as negativity breeds depression, and depression is a major side effect. (Mental note that sentence was really long) Ok so by now as you have been reading you have noticed I am mixing some humor within this post as that is who I am. I want people to see I am me and I have my up and down days just like anyone else with MS. I for one just want people to understand that and be there regardless of the type of day.

I hope this long post opens up some of your awareness to MS and I will close by saying much of this is based on my experience and observations of others with MS. I cannot speak for all as there is just too many versions of the disease and how it may impact someone. I will close by listing just a few of the celebrities that have MS and still are alive and kicking now and working in their trade. I’m doing this to help show regardless of who you are it’s your mindset and how you react that, to me, is the biggest help when dealing with MS.

Celebrities Past and Present

  • Jack Osbourne (Reality TV Star)
  • Annette Funicello (Actress)
  • Neil Cavuto (Fox News)
  • Montel Williams (TV Personality)
  • Jamie-Lynn Sigler (Actress)
  • Trevor Bayne (Nascar Driver)
  • Clay Walker (County Singer)
  • Teri Garr (Actress)
  • David Lander (Squiggy from Laverne & Shirley)
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Posted by on March 9, 2016 in Multiple Sclerosis, Personal

 

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In Darkness there is Light: Depression, MS, Suicide

DarknessI am ending the year of 2014 with what must be my most personal of posts I have ever written on the blog. This one will get into some deep corners of my mind as I feel in sharing some of that darkness I may be able to bring some light to those who finish this long post. I say that as I will endeavor to show a positive that comes from dealing with Multiple Sclerosis (MS) and depression. I will warn that this is a lot of free flowing thoughts and grammar may be bad. The intent is in the message not the grammar and I just had to get this written and shared before I lost my nerve.

The thing about MS is that it impacts every person diagnosed with the disease differently.  There is a stigma that comes from a diagnosis. People will often see a diagnosis as a death sentence. Suffers may look normal but still need a handicap permit to shop due to the high fatigue. People will question and judge a person they see using one as they go, “What’s wrong with them”.  It’s not fair but who says life is fair as if it was to be perfect there never would have been an apple tree in the Garden of Eden.

There are others who get the disease far worse than I. They may lose all mobility and end up on disability. They must give up some of the joys they had in life and face new challenges. Things like how to afford medication care and why are loved ones leaving me. I am fortunate as my MS I get fatigue, muscle spasms and yes the mood issues that can come with the disease.

This brings me to the first part of this post. I am writing this early in the morning when my mind will not shut off. I took my normal medication earlier in the evening and this is a side effect that has happened to me on rare occasions. The shot may have helped the muscle spasms I had been dealing with much of the past day but at same time it’s like I received a shot of adrenaline. I just cannot find any position to get comfortable in to sleep. My mind will not shut off and there are some lingering spasms that make it just as difficult to rest.

This is where the deep recesses of my mind are awoken. The trauma from a solitary existence in high school, my choice, led to darkness in college. This is where my first battle with depression came in. I became overwhelmed, and had to small of a support network to go to for help. I’m a larger person and never felt comfortable making friends as I heard some of the whispers in high school. I did get picked on but used my own humor to deflate some of those comments. I also was never one to be in the “popular” kids group as I saw more to life than partying, drinking and just screwing around. I was a social butterfly and that was my choice in life. It may be why I do not have many peer connections from that period in life left.

So thus came college, and what had worked for me in the past was not working so well. I fell into a DEEP depression and at one point even contemplated suicide. This will be a shock to any family members who read this as it’s not something I share. I am not going further into the why but I did get help and thus I am here today writing this post. I will add this is why I am a private person and often keep to myself and own devices. I don’t want people feeling sorry for me, but at the same time is it so hard for someone to ask how I am doing. This is not the time or place for that but it does bring feelings of guilt to the mind. What if I had made better attempts to communicate with people? I guess at this point I will take what I have in life and embrace what there is. Otherwise depression will try to come and claim me again.

The problem with MS is that for many of us depression is one of the side effects of the disease. It is in these dark periods of the night that thoughts come screaming to the front of the line. I have hundreds of questions racing in my mind. There are things I ask such as:

  • Why me? I tried to be a good person. I pray to God and my prayers are not answered in the way I prayed. I ask for a family member’s pain to stop, and they die. How is that helping? Why?
  • How is it there are people that are cruel to others doing so much better in life then me? Don’t I deserve some help? What have I done to be shunned? Is it fair?
  • Why can’t I get a Go Fund me page and get some help? I mean others get them why not me? Oh yeah people probably thing I’m not worth helping as I’m a fat loser.
  • Why must I go on living when all I want is peace and for the agony of life to stop?

 

The last of those questions is always the point I see a pinprick of light in that darkness. I see that light and I go racing towards it. I stop the angst and thoughts of shutting off from the world and scratch, crawl and fight my way toward that single point of light. The darkness will not take me. No I have not won the lottery. No I am not getting support from any government agency, or money falling from the sky. The problems of debt, self-doubt, self-loathing and pity have not gone from the mind. They instead are going back into that spot in my mind they need to be locked up within.

The muscle spasms of the night are still here. The unending feeling of energy keeping me from sleeping is still here. The one thing that is leaving is that darkness, that depression that fights to take control again. I am nowhere near a knife or anything that would allow me to do something stupid. I am too smart for that as I learned to overcome in college. I will not let those hard learned lessons from over twenty years ago be forgotten. I can scream in my mind about how God why have you shunned me. Why have you turned you back on one of your creations, but then I find peace. I realize there are so many of us on Earth that not all can be watched over at every moment in life.

If my faith is wrong and there is no higher power than it is up to us as humans to find our own way. It could be why each time I ask myself those questions, about God, that I realize that maybe exactly the plan for me. To find my own way in life like so many others have to do each day. It may not be what I want but it is the life I have and if I just stay positive good things will happen.

This is what happens as I reach that pinprick of light and start making it bigger. I take a sledgehammer and anything else I can find to make that light bigger. It’s like the morning sun crawling into the sky banishing the darkness to the corners of the word and brings warmth to all it touches. It’s how I see that light as positive energy that stops me from dwelling on the darkness. Instead I start to think what does this day have coming for me. How will I react to what comes my way and realize that each day I breathe is a new chance to start fresh and new again. It may not be the plan I have but I am here and it’s a new day.

If you made it this far you will see that although I am like so many others in life and those with MS, I have demons to battle. I am writing this to tell you…I will win! I will not let the depression and mood swings take me down as I am stronger than those. I have been on this Earth for over forty years now and want to go on being here longer. So bring on all that self-hatred and ridicule that may appear at night so that each morning it can be cleansed with the morning light. I may have tough choices ahead, my MS may get worse but I will not give into the darkness. I will find a way to scratch, crawl and fight my way to that pinprick of light. I will stay positive no matter what as everything has a reason we just have to find what that reason may be. As I say, “every cloud has a silver lining just sometimes you must rub through the tarnish to find it”.

 

I’m adding some late information as this was going to be posted during a lunch break today. This did not happen as unfortunately, after what I see as a big cluster F*$K this morning as work through a massive curve ball at me.  It added to the fun from the lack of sleep and muscle spasms but guess what happened. As I was ready to scream at the world and let someone have it later in the morning I looked outside. What did I see but a beautiful sky with the sun shining through the clouds. There it was again the light I will always search for to stay positive and out of the dark.

 
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Posted by on December 29, 2014 in Multiple Sclerosis, Personal

 

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