Wednesday, March 13, 2013

Yes, I have M.S. . . .


i was diagnosed 2 1/2 years ago with MS,
although we (my Dr. and I) think I actually had my first episode
 almost 12 years earlier.
i don't have an "MS" blog, but i don't hide the fact that i have this disease.
if it comes up, i talk about it.
but i find it best for me to focus on good things,
the happy things and moments in life.
which is why my silly 'ol blog sometimes lacks substance,
but then the whole point is that it is a fun, HAPPY release for me:)
and i sincerely hope that it's a happy place for you to visit!


so. . . . .why now?
well, in case you didn't know
 (and there's a very good chance you didn't know)
March is MS Awareness month.
yes, it's ORANGE ribbon time.
because we also do not have a cure.
and while we survive every day, there are technically no "survivors".
instead, there are people who live with a disease every day, 
one which will never have an end

 unless a total cure is found,
and it is getting closer, i pray.
anyway, i figured it was my turn to do a little educating on MS.
starting with, 

What is MS???
Multiple Sclerosis means multiple scars.
MS is a chronic, unpredictable disease of the central nervous system 
(the brain, optic nerves and spinal cord).
It is thought to be an autoimmune disorder, which means
the immune system incorrectly attacks the person's healthy tissue.


among other things, it can cause blurred vision or vision loss, loss of balance, poor coordination, speech difficulties, tremors, skin sensitivity, sensitivity to heat, numbness, muscle spasticity, muscle weakness, extreme fatigue, short term memory loss, concentration difficulties, immobility and MORE.  These problems may be permanent or
come and go, depending on the type of MS you have. 

Who gets MS?

~~~Approximately 400,000 individuals have MS in the United States,
and over 2 million worldwide.
~~~Most people with MS are diagnosed between the ages of 15 and 50,
although there have been reports as young as 2 and as old as 75.
~~~There are 8-10,000 children under age 18 who have been diagnosed with MS.
~~~The average age of diagnosis of Multiple Sclerosis is 37 years of age
~~~Women are more likely than men to develop relapsing-remitting MS
~~~Within the United States, your risk of developing MS roughly doubles if you
spend your childhood – up to the age of 15 – in northern states vs. southern states.

~~~Caucasians have a higher incidence of MS than those of African heritage
~~~A Vitamin D deficiency may increase the risk of MS
~~~There is no confirmed cause of MS, but these are just a few factors.
~~~There are many more theories online if you are interested.


How can YOU help?
1.  well, the rest of this month, wear something orange and talk about it.

support the Walks/Runs for MS or whatever fundraisers you come across.
every tiny bit helps.
or contact the MSAA or National MS Association. . .
but more than anything,
knowing exactly what it is will you better understand
someone afflicted with MS, or any of the "hidden" diseases,
like Lupus, Rheumatoid Arthritis and Fibromyalgia, to name just a few.

2.  listen. . . .and don't judge or hand out free advice.
I haven't had too many problems with this,
but I know of some who have had to deal with this quite often.
Even if we assume people mean well, it can be frustrating.
Probably the most important thing to know is that even experts say that
EVERY CASE IS DIFFERENT.
for example, my symptoms may be similar yet very different from your friend with MS,
so please don't assume I should be able to do what she does.
Know what i mean?


we know we're getting older.
we know we will have other diseases to deal with as we age,
we truly realize there are others much worse than ourselves,
and maybe one of the reasons this is such an "invisible" disease is that
we are a tough group who try not to dwell on our MS,
who keep moving forward and living life the best we can 
considering our individual circumstances.

reaching out is a wonderful thing to do.
and sometimes we all need a swift kick in the behind. . . .
but asking how a person is doing and then proceeding to know what
they are going through and giving free advice is counterproductive.
i believe that when most people are given a diagnosis of a disease,
they try to educate themselves the best they can.
that doesn't mean that new suggestions aren't welcome, because they are.
my sister first got me thinking about the whole vitamin D thing,
so you never know.

probably the one thing that is hardest to convey 
is the extreme and sometimes debilitating fatigue.
oh gosh, i get tired.
and there are two kinds of tired.
the "exhausted, can i go back to bed tired" or the
"my legs feel so heavy, i have no strength in my arms"
kind of tired.
and we get both.
in spades.


everyone gets tired and some diseases cause much worse sounding symptoms.
but when you suddenly get so tired that you actually think about
 closing your eyes briefly at a red light 
(yes, i felt that. . . .didn't do it, thank goodness)
or you are almost home from running errands and you just want more than anything
to pull in a parking lot and doze for 10 minutes,
well, then you know you're tired.
i used to love taking naps but now i hate them.
because i know i have to take at least one per day and there are so many
other things to do.


and the memory problems.
that's a real bummer.
pre-menopause doesn't help!


Okay, i'm almost done.
there is a really great explanation/demonstration of what it's like to have
a disease like this called the
Spoon Theory, by Christine Miserandino.

Christine has Lupus but it still applies.
She was trying to explain to a friend who asked her what it's like,
and came up with the spoon theory.
I would really suggest you go to her website and read the whole version.
When I try to edit it shorter, it just isn't as good.
But basically, you start the day with 12 spoons.
every single thing you do takes a spoon away and when you run out, 
you're done for the day.
meaning energy and any feel good feeling is gone.
see. . . .it's really better to read her version because this probably made no sense:)

well my friends, i'm really, truly done.
i doubt you'll see me mention MS, certainly at this length, for a very long time.
not that i shouldn't, it just isn't my main focus.
i am really doing pretty good.
and i want to stay that way.
and part of what makes me feel better is to try every day to find things to 
be happy about. things to laugh at.
which explains my simple, shallow blog.
it doesn't always work. . . . but i try.
(plus, if i stop to worry about what the future might hold. . . .well, that's a drag:)

please know i did not write any of this to get you to feel sorry for me
or anyone else.
or to convince you that having MS is the worst thing in the world, because it isn't.
i just wanted to raise your awareness and get a little support during this 
month of March and beyond.
and to help you understand someone in your life who may suffer with something
like this.

for me, i want people to know that if i was disorganized before,
i'm drowning in chaos now:)
i won't be offended if you remind me, repeatedly, of something
 i said, did, or said i would do.
(i need it:)
if i have the energy to do something fun, which i still do,
i simply ask that if i say i've had enough, or i'm tired,
that you'll understand.
that's it.

to my girls. . . . . 

i would be lost without you!
you show your support every day and i love you!!!

i hope i've made things a bit clearer today.
please stop what you're doing and look around.
is there anything in sight that might make you smile?
i bet there is:)

Happy ORANGE Wednesday!
xoxoxoxo
Suzanne

3 comments:

  1. I admire you for approaching this with so much grace. You and your daughters are so beautiful.
    Now I have a question.......I have read what you said before. I have a friend that has Lupus and also gets offended when someone says that she doesn't look like she is sick. I would think this was a compliment. Why is it not seen that way. She really does look good.....and so do you. Why is that a bad thing to say. When I had cancer, I hated it when people would casually say, "Oh you'll be fine". Just wondering. (((((HUGS))))) and thanks for sharing.

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    Replies
    1. Hi Debby! Thank you so much for your sweet note and great question!!!!! I wish I had a great answer:) Personally, I'm like you...it's a credit to how well I'm doing when someone says "you look great" or even "you don't look like you have MS". I know some would be offended by that but the truth is, progress has been made so we don't fall apart instantly with a diagnosis, you know? And my hope is that I continue to do so well, by the grace of God, that I still get those comments.
      As for your friend with Lupus, all I can think is that she suffers so much more than anyone may be aware but it doesn't show, and when she hears "you don't look sick", she takes it the wrong way. She doesn't see the compliment in it but instead she hears " you don't look sick...maybe you're not so bad after all", when she barely got out of bed...or something. That's all I can think of, you know? I would guess saying "you look great" might sound like more of a compliment to her.
      Sorry this is so long. One more thing...some just choose to see things different than you and I. it's one reason I shy away from support groups thus far. Having said that, I hear this so often that i wanted to include the "things not to say" in my blog post, but I'm with you:)

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    2. Thanks for explaining. I can see it better now. You do have to be careful what you say. ((((HUGS))))

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So, what do ya think? Do tell...I'd love to hear it:) Be Happy...

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