July 6, 2009 "Faith"

"In this you greatly rejoice, though now for a little while you may have
had to suffer grief in all kinds of trials. These have come so that your
faith..may be proved genuine."

1 Peter 1:6-7

Praying

"Always, Always he will be with you, God knows our pain." Song by Building 429. I couldn't get this song out of my mind. Our savior never fails and I truely believe that. I wanted start posting things from Kellye's friends. Most of them are writing about what it's like to MS. I hope this will help educate those of you who are reading my blog.

This first entry is from my sisters friend Kristin.

Having MS means many things change, and a lot of them are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand
even alittle about MS and it's effects on us; and many of those who think they
do know are actually misinformed. In the spirit of informing those who wish
tounderstand...These are the things that I would like you to understand about me
before you judge me:



Please understand that being sick does not mean I'm no longer a human
being. I have to spend most of my day in considerable pain and exhaustion and if
you visit I probably don't seem like much fun to be with, but I'm still me stuck
inside this body. I still worry about school, and work, and my family and
friends, and most of the time I'd still like to hear you talk about yours
too.



Please understand the difference between "happy" and "healthy". When
you've got the flu you probably feel miserable with it for a week or two, but
I've been sick for years. I can't be miserable all the time, in fact, I work
hard at not being miserable. So if you're talking to me and I sound happy, it
means I'm happy, that's all. It doesn't mean that I'm still not in a lot of
pain, or extremely tired, or that I'm getting better, or any of thosethings.
Please, don't say "Oh, you are sounding better!" I am not sounding better, I am
sounding happy. If you want to comment on that, you are welcome to. Please
understand that being able to stand for 10 minutes doesn'tnecessarily mean that
I can stand for 20 minutes or an hour. Just because I was able to stand up for
30 minutes yesterday doesn't mean I can do the same today.



With a lot of diseases and disorders one is either paralyzed, or they
can move.With MS it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed, and almost assuredly we are in pain. We have
good days and bad, and during our good days we may truly not "look sick", but we are.

Please understand that making plans other than immediate ones is a crap
shoot at best, because we can't know how we will feel or what our physical,
mental or emotional condition will be.



If we seem to hedge about making plans with you, please understand it's
because we truly don't know if we will be able to honor them. The same applies
if we have to cancel plans previously made or invitations, even at the last
minute - it is not personal, and it makes us as frustrated and sad as it does
you! That is what MS does to us, and it's how we must live our lives. It is not
just a matter of sucking it in, or bucking up, or psyching ourselves up; believe
me if we could, we would!



Please understand that MS is variable - with each person and from
person to person. It is quite possible and often all too common, that one day I
can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even
run with my dog; while the next day I may have great difficulty getting out of
bed, walking to the kitchen, or be unable to walk at all without a cane, walker
or other mobility aid.



Please don't attack me when I can't do today what I did before by
saying"but you did it yesterday!" or "you did it before!" Your frustration can
not begin to compare to our own frustration. The very act of planning while
notknowing what condition we will be in is stressful and tiring in itself. If
you want me to do something with you, or go someplace with you... ASK if I can.
I may well dearly want to go, but simply be physically unable to do so.
Understand if I have to say no today, but please ask me again soon.



Please understand that "getting out and doing things" does not make me
feel better and can often make me seriously worse. Telling me that I need a
treadmill, or that Ijust need to lose (or gain) weight, get this exercise
machine, join this gym, try these classes, take these vitamins, herbs, tonics
and snake-oil cures will frustrate me to tears and is totally incorrect. If I
was capable of doing things, don't you think I would? And when I am capable, I
DO! I work with my doctors and physical therapists and follow the exercise and
diet plans they prescribe.



Another statement that hurts: "You just need to push yourself
more..."Obviously, MS directly impacts muscles and ours do not regenerate as
quickly as yours do. Pushing ourselves beyond comfortable physical limits can be
dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally... and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours
if you worked a 12 hour day. Many days I can still do anything I ever did as
well as I ever did ... but only one thing per day or week or month. Everything
drains us and exhausts us exponentially more than a normal, healthy person
ourage (whatever age that is); our recovery time is also exponentially greater.



If I go to a party or dinner and show tonight for several hours and
have awonderful time, I do so knowing with 99% certainty that tomorrow I will
need all day to rest and recover, much of it spent lying down. MS causes
secondary depression in and of itself; our depression may escalate when dealing
with days on end of constant pain and limited mobility or cognitive function. We
are NOT tired because we are depressed! We are depressed because we are so
tired.When I say I can't do something because I am so fatigued, please don't say
"Oh I know what you mean! I am worn out too, but..." because you don't.



MS fatigue is not like any tiredness you have ever experienced, nor has
anyone who does not have MS or other fatigue-producing disorder. I know you mean well, but it's irritating to hear because it tells me you don't understand me or
my MS at all. I may well be just plain tired - we get normally tired during
remission phases just as any normal person does - but trust me: we know the
difference, and it's huge.When we are together, please understand when I say I
have to sit down, lie down, get a drink, take these pills, or get into a cool
place that I have to do it and do it now! No, I can't walk another 5 blocks to
the car, or walk back down the hill I just climbed up. Don't baby me, don't
hover over me, don't do things for me unless I ask - we are very proud and never
want to be a burden.



Our independence, or what we can retain of it, is of paramount
importance to us! Please help by listening to and believing what we say we need
and act upon it accordingly and as quickly as possible. You wouldn't question a
known diabetics request for orange juice or insulin, so please don't question us
or urge us to 'keep on... we are almost there!' Not unless you are prepared toa)
carry us the rest of the way or b) call 911.

MS does not wait, nor does it forgive... when we say "please ... now!" it means now. If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my family and friends suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better.


If there was something that cured, or even markedly helped, all forms
of MS the world would know about it. If you still insist on promoting 'cures' to
me or giving me'this will make you better' advice, do so; but understand I won't
rush out and try it though I may well continue to research it on my own and
discuss those findings with my doctors. In many ways I depend on you... people
who are not sick...



I need you to visit with me when I am unable to go out; sometimes I may
need you to help me with shopping, cooking or cleaning; sometimes I may even
need you to do those things for me. I may need you to go with me to my doctor
appointments to help me remember and understand their direction, or I may just
need a ride. I need you on so many different levels... as much as possible,treat
me as normally as possible, enjoy me and allow me to enjoy you as much as
possible, and.... as much as it's possible...



I need you to understand me.

Running

So let me re-committ myself.

On January 17, 2010 I WILL RUN the Houston Marathon.

It will be my 13th Marathon. And the first one in three years for me. I will RUN for A REASON for MS. So if your reading this make sure you contact me so I can email an invite to sponsor me.

When I did the marathon 3-years ago, I ran for CanCare, because my father in-law Dave passed away of Lung Cancer. But he had MS for over 20 years. And even though people told me MS didn't have anything to do with him having cancer, I believe it did, because he could no longer fight because of what MS did to him.

As healthy people and runners we are so lucky!! The least I can do is go through four and a half hours of pain, it's just a drop in the bucket to what people with MS go through on a day to day basis.

And if your a runner and want this years marathon to be something special run for MS!!

This Saturday my training kicks off. For the next 26-weeks a big part of my life will be dedicated to training for the marathon. I pray that my wife Ginger and my boys Davis and Drew understand. Anyway, until tomorrow.