Random Ramblings

The saying goes another day..another dollar, but in our life lately it is another day....another miracle. We have actually had two miracles in two days. The first came in the form of another parent with a child with disabilities pointing out a rule that we were unaware and not informed about. This rule allows Zech to say where he is right now, until we have run through the entire appeal process (which could take up to 90 days). At the very least this would get him through to the end of school. Of course we are still hoping for a miracle in that we get his funding reinstated totally.

The second miracle came today. Last week Tim had to take a night off of work to stay home and take care of me. This was a night off without pay, and we were really sweating how we were going to pay the bills having lost the pay. Well we sat down today, and even though the check was smaller then normal we were still able to pay the bills needed and our tithe this week. God multiplyed the money that came in!!! I am so thankful that God's miracles still happen today. All in all was a great day!

I received this today, and had to pass it on in whatever way I could, because what it says is so true!

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 a little 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 to understand...

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 those things. 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't necessarily 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 not knowing 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 I
just 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 our age (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 a wonderful 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 to
a) 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.
Posted on 03/31/09, 04:03 pm on DS http://dailystrength.org/c/Multiple_Sclerosis_MS/forum/6688302-having-ms-means/lastpage

What does that phrase really mean, to go "postal"? Well I have to tell you that any time you deal with the government and their bureaucracy, there is absolutely no other thing you would like better then to walk into said bureaucracy with a fully loaded gun (the biggest baddest you can find) and just blow some heads off. But being the kind natured, non-killing type of person that I am, I guess that is not an option for me. I spent nearly four hours working on an appeal letter for my sons grant money. The whole time I was writing it I was dealing with two feelings. The first of utter hopelessness, that no matter what I write or how urgent my plea, that some "idiot" will read it an once again deny it. The second feeling was one of sadness. By doing this appeal process, I had to dig up any facts and quote them as a basis for my appeal. Now mind you I could only go back through one year of paperwork (this was not part of my four hours by the way). The stack was nearly 12 inches thick of paperwork generated in one year. I was saddened by the continual diagnosises as well as the lack of improvement on his part. It hurts so badly to know as a parent, that even when you have done your absolute best, it still may not be good enough for your child to live a healthy and productive adult life. While I no longer put blame on myself for the circumstances that surrounding his early birth and possible brain damage in utero, I do feel an abundent sadness deep within, that he has such a difficult road to walk down.

All that being said, I have finished the appeal letter, and have several looking at it and proofreading it for me. When that is done, it will be sent to the proper authorities, and then we wait. Oh what Fun!

Well, I don't know what has gotten into me as of late. Here I sit with my hubby home for the next week on vacation, and rather then enjoying the extra free time, I just feel restless. I thought I would be able to put this time to good use writing, but just can't seem to find the inspiration at the moment~or maybe it is the words as the inspiration is always there. I tried to stitch, but just can't seem to get into a rhythm with that either. I even went onto my favorite game site, pogo.com and tried to spend some mindless minutes playing games. Nope that didn't work either. I just feel like "doing" something, but have no idea what! Have you ever felt that way? Of course the "doing" does not include the things I should do like cleaning, laundry, bills, etc. I have a beautiful piece to stitch. I found it here . I would love to sit and work on it, and get it done!!!! (I am making it for our pastor). But I just can't seem to get in a jive...and anyone who stitches knows you can't force that! So here I sit, blogging and staring at my facebook page (BTW that is an evil, evil thing). With my luck, no doubt, I will hit a zone late this afternoon when the kids come home, and then won't be able to continue on in whatever because they will be here distracting me, or hubby will want something or or or...

Ohhh whoa-is-me ROFLOL

Okay, now to be serious.............I shall try to get something accomplished, like some writing perhaps :)

Why is it that when we are in the midst of heartaches or struggles we forget to look upon the One who has all the answers? Why is my first call to my husband or my best friend, rather then to the God who sustains me? God is so good, and faithful for forgiving my insecurities. While in church this morning we were singing a song about being in God's presence, and that is exactly what happened. His presence came and visited on me, in such a tangible way, as if God Himself reached down from heaven, and put His arms around my shoulders. And there I sat crying. God did something for me that I had been needing from those close to me all week, He let me cry on His shoulder! What a wonderful experience. And a peace fell over me. Yes I still have struggles to go through this week, but I have a peace about all of it. I know that God has it all worked out, even if I can't see it!!!!

Anyway, I just had to share.