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Tag Archives: Multiple Sclerosis

A Self Reflection on Multiple Sclerosis

I wish to continue putting some additional focus on Multiple Sclerosis for this month of March, 2019. I am doing this as I have not seen much in the way of social media postings, or awareness being brought. Yes, I could be living in a bubble, but I have just not seen much other than the standard groups.  MS organizations and even drug manufactures are out their promoting it but not much else that I have seen.

So, what I am doing with this posting is linking back to several past articles I have written about MS. The posts I am sharing go far back into the archive going back to maybe 2014.

The below are links to several of those postings I wanted to share with a blurb that was the opening to each of the pieces. I do hope you will find these interesting and share to help others who may find strength from the writings, or find some useful information.  One thing you will note is as I’ve written over the years my grammar and writing has improved, I hope. (smiles)

 

Suicide is Painless

This is not an easy blog post to write. I have started over multiple times as the subject is not one that people want to hear about. It’s one that many feels belong in the shadows, that the problem is all in someone’s head. The fact is, it is in their head. Their emotions are all over the place from any form of issues which includes, and not limited to, the short list below:

July, 2018… https://knightmist.wordpress.com/2018/07/26/suicide-is-painless

My Answers to 5 Frequent Questions on Multiple Sclerosis

I’m one of those people who is not afraid to take time to talk to someone about the beast that is now part of my life. The beast is nothing that is seen upon my body. You do not see a creature hiding behind me, on my shoulders or hugging my leg. Granted at times it does feel like it is hugging both legs and even my arms. The beast is called Multiple Sclerosis.

July, 2018…https://knightmist.wordpress.com/2018/07/01/my-answers-to-5-frequent-questions-on-multiple-sclerosis/

Strong Legs and a Lesson

My original plan was to write a post on a book review but then I saw something that had me change my tactics. The source too many is hated and one of the worst news sources in the world, and that is Fox News. So, what could I find from there that would have me creating a blog post? I’m sure there are a lot of ideas running in people’s heads, but I’m sure they are in most guesses wrong. The title of this post may have given an idea, but what brought me to this post is simple. Her name is Janice Dean; she is a meteorologist for Fox News and most importantly has Multiple Sclerosis.

January, 2015…https://knightmist.wordpress.com/2018/01/15/strong-legs-and-a-lesson/

Personal Insights into me and my Multiple Sclerosis

I’m not one to do year in review type of posts. I do think it is important to learn from the past and to move forward, but not live in the past. So I do not go for the end of year, or highlights type of things. Instead I noticed I have not mentioned much about my Multiple Sclerosis and what that brings to my life in some time. So, that is the point of this post, my life since I got diagnosed.

December, 2017…https://knightmist.wordpress.com/2012/12/17/personal-insights-into-me-and-my-multiple-sclerosis/

M(s)onster Awakens -A True Story

I wish I could say that the reason for the lack of content over the last few weeks was due to something new and exciting. Sadly I would be lying if I stated that as much of my lack of content has been more relating to health issues.

I’ve written about my Multiple Sclerosis before and after the survey results it was revealed people wanted to see more content around it. So this post is a glimpse of the struggles I’ve been dealing with over the past few weeks. They are health related and I have no fear exposing myself, not in that way people, to the world when it comes to the MS. Yes I am still me and got to throw out some odd humor to lighten a serious mood. It’s just who I am. I must now get back on track, so back to the meat of the post.

March, 2015…https://knightmist.wordpress.com/2015/03/30/msonster-awakens-a-true-story/

Fall and the Monster

The change from spring to the fall is one of my favorite times of the year. The leaves turn from their summer green to hues of yellow, orange, and red before they fall to the ground. It’s beautiful to see those colors as they hang from the countless number of trees, at times it looks as beautiful as a sunset. The one drawback the leaves falling gracefully to the ground, and creating a carpet of color is raking them off the yard. This brings me to the main topic of this long promised post, The Fall and Multiple Sclerosis.

November, 2015…https://knightmist.wordpress.com/2015/11/23/fall-and-the-msonster/

Dangers of First Impressions (Opinion by Shawn Micallef)

As many know a first impression is the mental image a person forms regarding another person when they first meet. This is usually is something that comes from a first face to face encounter, but today I’m sure can be formed through internet interactions were people never see each other. Well, I should add never see each other at first.

April, 2014…https://knightmist.wordpress.com/2014/04/11/dangers-of-first-impressions-opinion-by-shawn-micallef

In Darkness There is Light: Depression, MS, and Suicide

I 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.

December, 2014…https://knightmist.wordpress.com/2014/12/29/in-darkness-there-is-light-depression-ms-suicide/

 

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Posted by on March 13, 2019 in Multiple Sclerosis

 

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My Answers to 5 Frequent Questions on Multiple Sclerosis

I’m one of those people who is not afraid to take time to talk to someone about the beast that is now part of my life. The beast is nothing that is seen upon my body. You do not see a creature hiding behind me, on my shoulders or hugging my leg. Granted at times it does feel like it is hugging both legs and even my arms. The beast is called Multiple Sclerosis.

I have blogged in the past about it and it is something I do plan on continuing to post new blog posts on in the future. I made it easy for people to find my older posts with a category titled Multiple Sclerosis.

This post is going to go into what I consider the five most frequent questions I get when I tell people I have MS. I will warn readers that I use humor, sarcasm and at same time I can be serious. You will find that within this posting and hopefully it opens your eyes to what some, not all may go thru with MS. I know from my point of view this is what I go thru. You are as always welcome to share this post if you so wish.

  1. What is Multiple Sclerosis?

I always am tempted to go with the medical explanation of how immune system will attack the Myelin around nerve cells, and blah blah blah. I can just picture the glass eyed look of how I could lose someone going into that so I often explain it in this way.

“MS is like your computer, brain, giving orders to your body telling it how to do everything from breathing to walking. It controls so much of our body and many of those orders go thru the nerves. Sadly MS is like when somehow, and unknown, those commands don’t fully work. It causes all types of computer issues when you get a virus, and MS can cause all types of problems with the body. Sadly it’s not a virus it’s something science hasn’t figured out yet.”

  1. Did they give you a time frame on life?

This one gets me to laugh a bit. I say that as really there is no expectation on when you’ll die due to MS, if it is even the cause of your death. I mean if you think on it the moment we are born we start by taking a big breath into this world. Every single breath after that first one could be our last.

So, we have to stop worrying about when it may end but instead worry how we spend that time. Do we worry about things we cannot control? Do we let a disease dictate our life expectancy? I say NO, as for me it’s a ride and I hope to enjoy it, stay within the law, and hopefully leave a mark of positivity. If I’m remembered for anything I just want it to be that I cared, I listened and I tried to help if I could.

  1. Do I get depressed, or was I depressed?

You know, I think those I first told about the diagnosis where more depressed, and unsure what to do then I was. To me it was a part of life, and I was not going to let it change who I was on the inside. This comes from a battle of depression in my early college years. I learned so much about myself and add in psychology course I took I learned to let things go. Sure I can get upset at times, who doesn’t. The main difference is I at least have learned what to do to overcome.

The biggest thing about depression, in my opinion, is not to run from someone looking to talk. Do not judge them, the best thing we can do is just listen. Let them express their emotions, the suffering that has put them in that bad place. Let them give you hints on how you may be able to help instead of just saying they need to do this or that. The biggest step for someone with Depression is the fact they talked about it.

  1. What are some of the symptoms of MS?

This is one that is hard to answer. You see we have heard that life is like a box of chocolates as we never know what we’ll get. MS, to me, is a chocolate store. I say that as there are various versions of the disease and each has its own symptoms that can impact a person totally different then the next person.

Me I had severe nerve pain and muscle pain in my arms and legs. My arms would suddenly start contracting in on themselves and was very painful. I got to a doctor and after many tests the diagnosis came back. I still have some of the common issues that come with MS.

  • I get pain at times in both my arms and legs.
    • Some refer to this as the MS Hug as you get a sense someone is hugging you deeply and won’t let go.
    • I also get a tingle feeling in the arms and legs.
  • Fatigue is the worst one to me. You get tired and really you can’t fight it.
    • I think of it as if you stayed up for over 24 hours and body is demanding sleep. No matter how much caffeine you may take to stay awake the fatigue is going to claim you.
  • Vision Issues
    • I have had a small loss of vision within in my left eye. I can see out of it but imagine looking thru a piece of paper with tons of little holes punched in it. There will be spots you can’t see and that’s my left eye.
  • Concentration Issues
    • This doesn’t happen all the time, or too often. I believe this is why I am one who enjoys the challenge of multitasking. It helps me bounce from project to project and back again. It can be a pain though and when it’s bad, well that’s what a “To Do” list is for.
  • Others
    • There are a few other things like I’ll get some numbness in my right leg/foot at times. It’s nothing to major but it does happen from time to time.
    • Emotions can be impacted as I have found I tear up while watching a movie for no reason. It maybe something I’ve seen for years but boom it happens.
    • Bowels, well I won’t go too much into this one as don’t want people running away going…..”EWWWW”. I’ll just say that when I have to go to the bathroom, sometimes it’s important I get there. Thankfully I have not had to buy a lot of new underwear or pants. HA HA
  1. Anything I can do to help?

I do like this question but I got to say it’s the hardest to answer.

  • I mean those who ask I’d love to tell them sure, take this thing from me. However, I know they cannot and to be honest would not wish it on them.
  • I’d like to go sure, got some money I can have? I mean before I got good insurance bills hit hard. Those I have joked with about that will say set up a Go Fund Me page or something. I just can’t do that, I think it’s my pride and well I keep finding a way to make sure bills, and mortgage are covered. Granted got to say at times…….well…..yeah. (Insert a smile here ha ha)
  • What can they really do most is do not feel sorry for me. I try to lead by example. I do not want someone feeling sorry as its life. As I mentioned before I am still taking a new breath and my time has not come. We live in a world of challenges and do not let the petty and stupid guide your life. Agree to disagree and continue being a friend. Agree to know what topics may be off topic and leave them out of conversation. Most of all understand I never been one to really put myself out there. In truth this blog is my way to do that, and I know I’ve lost many of friends in my life due to this part of myself.

I’ll add that MS is like many other diseases in the world. It does not matter who you are, where you are from it will impact people of all kinds. Some are more than willing to talk about MS, and others treat it like depression and hide the diagnosis. I personally do not care how one deals with the diagnosis as long as they DO NOT GIVE UP.  I’ll end this very long post with the one quote I often say to people.

“I may have Multiple Sclerosis but is DOES NOT HAVE ME!”

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**Please note all copyrights/Trademarks are owned by their appropriate person, company. I make no claims.

 
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Posted by on July 1, 2018 in Multiple Sclerosis

 

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Strong Legs and a Lesson

My original plan was to write a post on a book review but then I saw something that had me change my tactics. The source too many is hated and one of the worst news sources in the world, and that is Fox News. So, what could I find from there that would have me creating a blog post? I’m sure there are a lot of ideas running in people’s heads, but I’m sure they are in most guesses wrong. The title of this post may have given an idea, but what brought me to this post is simple. Her name is Janice Dean; she is a meteorologist for Fox News and most importantly has Multiple Sclerosis.

I’ve posted many blog posts about my struggles and issues with that disease but what I saw there had me change plans for this week. You see some viewer asked Janice Dean to stop letting Fox dress her as the skirts were not flattering on her. I got to say I have not watched Fox News in sometime, and to be honest I do not watch any major news outlet. I only saw this story due to the fact she does have MS, and I got to say she handled it gracefully. The key thing she let that body shamer know that she’s proud of who she is and those strong legs. In her response she pointed out that she was diagnosed with MS about 10 years ago, and of course told the viewer if you do not like them you can turn the channel.

This got me thinking about not just those out there that suffer with MS wishing they still had strong legs that would allow them to walk, but much more. I for one am thrilled that my relapsing MS is under control and my legs still allow me to move around. I personally know others who have lost their ability to walk and now either rarely go out, or use a wheel chair.

Now, I want to get more to the point of this posting and bring up one of the best lines from Janice Dean’s response. The line was, “you can always turn the channel”. What makes this so interesting to me? It points the most logical thing a person can do if they do not like something, and that is turn the channel. I mean she’s not breaking any laws here so if they do not like it the option is to turn the channel. The option isn’t to boycott the station, call for a national boycott or even threaten her more so she changes what she wears.

I know what I said in the last sentence seems like a leap, but that is the world we now find ourselves in. If someone does not agree with a perceived way of thinking groups will threaten, boycott, or worse cases cause harm. It doesn’t matter the political stance of a person, or group, it’s the fact they want that offending person to pay for not thinking like they do. It’s an epidemic and makes me think that there are simple options to the issue. If you don’t like it then “turn the channel”. I know not all cases are so cut and dry but really is it that necessary to create hate, and loathing.

I mean here we are as adults saying we need to stop bullying in the in children but what type of example are we adults setting. We sit behind keyboards, smart phones, social media and other devices to speak of hate. We want a business put out of business, thus destroying not just an owner that may be the issue but all that work for them. We will threaten people with death threats; put up internet pictures of death or violence. We will even cut off long term friendships for a disagreement because they do not think the right way.

So I realize I’ve come a long way from Multiple Sclerosis and have gotten a connection to bullying. It however is in away fitting that these things are connected. We live in a society that pledges that we accept the differences of others, that we should be free to think as we wish. However, we instead shout down those differing views if they do not fit a specific ideological opinion. We scream and yell at others before even taking a moment to try and understand them.

To be brutally honest, to me there is one simple cause for much of this. It’s that simple thing that helps us all connect at same time divides. It’s social media as we have forgotten how to truly talk to each other. A simple message about someone’s looks can create the need for Janice Dean to respond to shame. A simple message can bring hundreds, if not thousands, down on a person for daring to think differently. It is really easy to do so much of this HATE when you are not looking into someone’s eyes. You do not see how your actions can hurt and scar a person when you are not up close and personal.

I’m going to end this post here as I hope it gets people to think. I mean when was the last time you actually sat and talked with someone? Do you talk to friends, or family, more over a messaging device over face to face or a phone? Ask yourself what kind of examples are we adults setting for children when we take everything so personally? Just stop and think on those questions. I’m hoping this post does not create hate as it’s not the cause, but who can say. I’m asking people to stop and think and I’ll add now if I see hate coming in comments they will be deleted. I’m not one to continue the cycle but asking people to think. Even better for those things you find so upsetting instead of attacking and wishing death, try telling them you love them and hope they rethink their opinion. Let love show that it can conquer the hate by turning that hate to love over hate. If I’m lucky some will read this and realize what I am saying in this long winding post.

**Note the two links in the article will take you to an opinion piece by Janice Dean, the other an article from Forbes on the dangers of lack of human interactions.

 
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Posted by on January 15, 2018 in Multiple Sclerosis

 

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2017 Year of Challenges

I first apologize to readers of the blog for my total lack of new content at decent intervals. I also must apologize to the authors I feel I let down by not getting book reviews out in a timely manner. I am one that hates excuses, and I feel as if I have told this story before.  I am going to share some of the challenges of the past year with you along with a New Year Resolution.

First let me start with that resolution. I say this as I normally do not make resolutions as to me they are a promise and I do HATE breaking promises.  My resolution is to provide new content to the blog at least three times a month and when possible even more times. Content will be anything from continued book reviews to short stories, or just blurbs on life. So, there I’ve put it in writing what my resolution is and I will say for readers they will get this next statement. I promise there will not be a chapter like that from the William Faulkner book, As I Lay Dying. The chapter simply state, “My mother is a fish.” I’ll wrap this up by just saying that one of those books I had to read in high school as not really my cup of tea.

So 2017 was a lot of “fun”. I believe I posted about some of this previous but it was the year filled with the following things and thankfully not all happened to me. They unfortunately do involve family and as I wish to not give too much information out on their relationship to me let me just go with the list.

First I’ll start with the issue that had me scared, and still am, and this one deals with me. I have what I call micro blind spots in my left eye. They came about early in the year and after tons of testing my Multiple Sclerosis drug changed. This appears to be for the good as I am now on an oral medication, meaning no more shots. It also meant that some new lesions in the brain have gone done which is great, but a bit late for the eye. The good news it hasn’t gotten worse, but hasn’t gotten better either. I’m sure some will understand how that would impact my reading, and writing.

Now as for the family the list below is what they went thru, and as people say…Family comes first.

We saw:

  • We saw cancer diagnosis of not one but two forms, one was very close to be pancreatic. Thankfully it wasn’t.
  • We saw an infection get out of control and hit the brain. This was scary as anything with the brain can be potentially deadly and thankfully recovery was seen.
  • Broken bones requiring surgery, and short care rehab facility.
  • Bad backs requiring scans and talk of surgery, but thankfully that did not happen.

I realize the above list does look short, but much of the items where yearlong struggles. Some of the above even has continued into 2018, but thankfully not severe. In any case it was a year, and oh yeah our Ford Explorer decided it did not want to make another year. So car payments are back as we had to get rid of the 2004, and step it up by 10 years and get a 2014 Escape. Yeah that would seem like a perk but the car payments thankfully fit into the budget. Anyway that is not changing the fact my reviews are still free with the only thing I ask of authors is a copy of their book. I give an honest review in return no matter how much it would be nice to have some additional funds. (Insert a smile here)

So as I promised at the start of this posting there will be new posts three times a month on the blog. They again will be a mixture of postings but there will be more regular new content. I thank you for hanging in there. As always I am open to feedback and can find out how to reach me on my About Me page.

 
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Posted by on January 7, 2018 in Personal

 

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Life was Stormy but Brighter Things Are Coming.

I’m sure by now there are those who follow my blog wondering what the heck happened. Where am I? Did I stop writing? Did I maybe die? Did my Multiple Sclerosis decide it wanted to take some joy from my life? No to all of those as I can honestly say that none of those are true and really they are the furthest from the truth. I do need to edit this piece a bit as MS did decide to flare up and I’ll get to that in a bit.

I could go on a long babbling story about what really happened but I want to make this post somewhat short as really it is a re-introduction to what this blog is for. So let me hit the points now to explain how the end of 2016 was stressful and how 2017 is finally calming down.

The month of August saw me traveling to the Mayo Clinic in Rochester, Minnesota, not for myself but my mother. She had been dealing with some health problems for a while and just before she planned to take a trip away from her home her hairstylist, of all people, pointed out how she looked jaundice. This led her to get to a doctor and after much testing they told her she had developed cancer. This is what brought the trip to the Mayo Clinic for the first time in 2016 and it would not be the last time. After surgery to remove a spot from her lung, we went back so the doctors could remove the original tumor that was found. She actually had two surgeries on that last visit over a span of a week and being the family we are she was one of the unique ones to be fighting two cancers at one time. I have to say the good news the doctor shared after the primary surgery made being in a hotel over Christmas worth it for us.

As my mom was going thru this my younger brother was dealing with his own life/death situation. He is one of those who likes working outside, and he and his wife own several animals. They have horses, chickens, dogs, and I could go on but really you probably don’t want to read about their small “zoo”. Anyway somewhere between the work around his home and the work in community a horrible infection took hold and he’s been battling that for some time now. As it is his story I will not go on to much more on that except to say that he is doing better and using a strong faith to help him deal with things. This faith along with support from family and friends is helping so much.

As for me, I started reading again and was lining up some reviews. I even have a few I am about done writing and wanted to share but then mid/late February things got weird. My left eye sight started to get blurry in the vision. It reminded me of what my grandmother went thru when she started losing her sight. A look out the center of the eye resulted in blurry vision but my peripheral vision for the most part was fine. I figured with some fatigue and other issues I had going on this was an MS flair up.

I had a normal six month checkup with my neurologist and mentioned the issue to her when I had that visit. A MRI was ordered and after having that done on a Friday, after a day or two of phone tag I got the results. The person who read the MRI said that it was NOT MS related but did state they had found three new lesions in the brain. Okay not the news I wanted when it came to the lesions but that is the disease but I still thought this eye issue was MS related.

This lead to an eye doctor visit a week after the MRI and that is where things got moving, and moving fast. First I got to say I have an outstanding eye doctor as she went well above the normal to help me on that visit. At first there was talk of a fix being glasses but then the retinal exam took place. She was going on about how healthy the right eye looked and the left eye she stopped. She asked if a few other doctors where available and next I knew she was consulting with retina specialists and then on the phone with the on-call neurologist for where I go. It came back that, yep it was MS related and I had a few choices. I could wait till Monday or get into the Emergency Room and get started on steroids that night. As we dealing with my eyes I went in that evening and started a steroid therapy treatment plan. I got to say that after just a few days my eye is feeling a bit better.

I realize these are a lot of excuses and I do HATE making excuses. There were some positives over the end of last year and the start of this year as well. Mid-year in 2016 I got promoted to a Front Line Leader (Supervisor) in the department I work within at my employer. I know have a small team of people reporting to me. The interesting thing my team is spread around the company but I am enjoying the challenges and most of all my team. My wife and I were given a small inheritance from when my mother sold my father’s business. This has allowed us to take on some home projects that we had been putting off. So, it hasn’t been all bad. Of course there is the joy in seeing my wife get ready to go visit her father who lives out of state who she hasn’t seen in a few years.

I just wanted to make sure that those reading knew that although it has been a rough six or eight months it wasn’t all bad. Things are picking back up for the positive and as always I am one that is trying to get back to the things I love doing. This means I do plan on getting those reviews I started out there, and more importantly getting all those authors waiting on a review realizing I did not forget their works. So, get ready as I may have to blow up the zoom in my Microsoft Word right now to write, I will be writing.  This is why the photo I used is one that was taken of a rainbow after a rain as to me it shows that thru all the stormy weather that life can bring something beautiful is waiting just behind it.

 
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Posted by on March 12, 2017 in Personal

 

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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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Where have I been?!?

Lost & FoundI was going to originally title this piece, “Where’s Waldo”, but was afraid of a trademark infringements. There was also the thought that someone would think my name was Waldo, or people would be looking for a photo crowded with people and hopes of finding a guy with a red hat and glasses. I however must stop with my pitiful attempt at humor (if you laughed YIPPEE) as I’m sure many are about to stop reading about now. So let me get down to what has been going on since the end of last year.

I’m going to be sharing some medical information and do my best not to turn this into a pity party type of post. It’s just to show that life has its own plans for us as what we may want to do can be very rudely interrupted by what life brings at us. It’s a fact that many of us know but at same time something many cannot overcome. They instead find ways to let the bad make things worse over finding a way to dig their way out. It’s why I write posts like this to share that with strength the bad things of life can be overcome if you try.

I had to stop and thing where to begin with this post. I will start that after a pretty normal Christmas season, wow it has been a time, I saw my primary physician not long after the New Year and that is when things started. The doctor felt it was time to maybe change up my diabetic medication. I had no problem with this request as I had good things about the drug. I could handle the need to urinate more frequently as I knew there would be a vicious cycle. It was a case where you would have to drink water to avoid being dehydrated but at same time all that liquid you have to go. I will say I wore out a bit of show tread there for a while.

It was about two to three weeks into taking the new medication; it was Invokana, when I started having some problems. My vision went blurry at times and I had some trouble walking. All listed side effects of the drug with the vision being one of the worse ones. I called my doctor and was instructed to stop taking, which I happily did. I was getting tired of feeling so bloated and then dry from that cycle.

I know those who are familiar with Multiple Sclerosis will say are you sure that wasn’t the issue going on? I did call my neurologist and they stated from the issues I was having it was more than likely the medication, and since they went to school for neurology I listened to them and put it down to the Invokana. So, yep there I was a bit of vision problems and unstable walking. I got to say trying to read after a long day at staring at a computer with occasional blurry eyes made reading difficult.

It was about this time I had brought up some pain I have been dealing with in my hip for at least five years. It was never too bad but it was starting to get worse and figured about time to have it checked out. So, here we go we have X-rays done and told to see a specialist. It’s off I go to another doctor and shockingly nothing is wrong with my hip or the joints. I’m a big man and to me that was a WOW moment but yeah this didn’t help the pain. This new doctor decided nothing he could really do so he sent me to a pain specialist. Ok, wait for it as there is a joke coming and it’s a bad one so move along to next paragraph if you choose. So, yep off to a pain specialist I went and this whole thing was giving me a whole new pain in my head. I did say bad joke.

I went to the pain specialist and he ordered the one thing I fear and that was an MRI on my back and hip. You’d think that having Multiple Sclerosis I’d be used to MRIs but I’m the opposite. I’ve had so many of them that I don’t want them anymore, but this needed to be done. I was lucky that they could put me in feet first and with help of a nice pill I was very comfortable. The outcome of this MRI, you guessed it, NOTHING was found. UGH! To finish this long story the pain doctor called for an outpatient procedure and had me get a steroid shot in my sciatica. I got to say it was kind of fun as I was wheeled in face down and a female nurse grabbed my scrub bottoms and yanked them down to expose some cheek. I think it was the first time I got to partially moon a room with four women in it.

I have to say there is more going on and as I see how long this is getting I’ll stop with the jokes and wrap up things pretty fast. It was early February when much of this was coming to a close and the issues from the Invokana had not gone away. It couldn’t be just the drug then so after seeing my neurologist on a six month check you’ll never guess what’s happening in a few weeks from this post writing. I’m sure some have an idea, well if you guessed another MRI you’d be correct. Oh and during all this a few dentist visits as I am approaching the end of a long process and the day that ends is the day I get my MRI.

So, if you have been reading along you can see I’ve had a lot of things going on. I have authors waiting for book reviews and I feel absolutely horrible that I have been delayed due to all the personal items going on. I have readers of this blog I also feel like I have let down but sometimes in life you need to look to what is important. This health crap that has been going on at least has met its three if you are one who believes in trinities. The diabetic medication, the hip and now a potential MS flare up. My hopes are it’s done for the year and I can get back to normal. I will say I have begun reading again and should have some reviews out soon.

I want to thank the authors who have been so kind and understand all that has been going on and are not upset. They get that life happens and are not holding any of this against me. I also want to thank any readers who have checked back for more content as well. I of course must thank my small inner circle for putting up with all the doctor visits and fun that has come with the stress levels and small mood swings. I’ll close out by saying new content is on the way just be patient as all this fun is coming to its end and I cannot wait to get back to normal.

I at least did not go into the cold and snowy weather that has been felt here in Wisconsin and the shoveling that has come with it. It’s just another fun factor from the last months. I’m sure I’m not alone by saying bring on Spring.

 
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Posted by on February 15, 2016 in Personal

 

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