This page is going to mine, I guess. Lucky you, eh? LOL. So what I'm going to do is update about my MS and maybe a little of this and a little of that while I'm at it.
If something touches you, whether good or bad, me and everyone will be more than happy to hear from ya so just visit the
contact us page and one of us, more than likely me, Lori, will get right back to ya!
05 MAY 2009
Hmmmm...there is so much going on & I love it! Wait, let me amend that to
pretty much love it. Blah. Ok, so first, I could've wrote the night after my Toledo MS Clinic appointment, but I was so dang angry at the MS that I couldn't even stand myself much less believe anyone would've REALLY have wanted to hear the crap that wanted to come from my brain, to my finger tips, to the keyboard. Would've been ugly. Trust me.
Seems as if things aren't very nice in my MS world these days as it is trying to amp itself back up again via my right leg again. And the headaches are back to being killer once again. And it's only been a few months (once again ARG) since my last IV steroid trip & the problems that sent to the freaking iv steroid trip in the first place only decided to take a vacation...a short vacation. Geez. And it was suggested to me that driving on highways would not be good for mine and others' continued good health as I need my left foot to help out my right regarding the brakes...slower reaction time.
So please drop me a note and say thank you, Lori, as I appreciate not having to worry you might kill me on a highway in the near future as you are heeding the doc's advice. Phbbbbbt. ;}
BUT...since I will be seeing the special MS neuro at the clinic in Toledo from now on, I have this HUGE swelling of hope now that he is someone who will be able to finally get me the help I need to calm this crap down.
We are still looking at chemo, of course, and I will have to do another MRI to see if the Copaxone hasn't helped slow the growth of lesions, etc. and bloodwork and this test and that test, BUT...since I've been doing the new medical stuff regarding MS on this site, I've found so many new and wonderful things that can also be tried instead of
just the ugly chemo so.....I HAVE HOPE HOPE HOPE that something good will be done for me.
And if, in the end, nothing is really gonna work for my particular brand of "the gift", I WILL HAVE TRIED! And for someone like me that's amost as good really. I'm not one to just lay down and let crap roll over me so for those of you who know me, you know I speak the truth. lol.
AND NOW FOR PAUL HARVEY'S "THE REST OF THE STORY":My weekend was one of thee most wonderful, beautiful, FUN, music lovin', Harley riding weekends of my entire LIFE I kid you not.
From late afternoon Friday til waaaay early even this morning (lol), my minutes and hours were full of truly blessed moments. And even what I think some might call not so blessed but
WAY fun moments for me anyway (lmao) as well! It makes me wonder how I could be so dang blessed and loved and still manage to be a real pain in the butt. lol! You'd think I'd have this blinding white aura surrounding me that shows just how blessed I am, I am THAT blessed and loved and I KNOW this which begs the question: why do I still manage to have moments where I just want to beat the tar out of something, anything, I get so pissed? ;/
I get so damn mad & bitter @ the MS sometimes for taking "things" away from me, for seeming to make my decisions for me regarding my life & how I WANT to live, that I need to buy a punching beg to wear myself out so I can be around others without being a horrendous bitch.
When that happens tho, that kind of anger and bitterness, G-d tends to take pity on me for being blind once again and hands me moment after moment of awesomeness...like this past weekend...to show just what the hell life is supposed to be about if we would just freaking open our damn eyes!
LOL! ;p
29 APR 2009
So tomorrow I have to head up to Toledo to the MS Clinic and I am really excited about it. Didn't like the doctor the last time I was there, but that had been a pretty "off" day for me MS wise so maybe I will change my mind about him tomorrow? I just want some ideas on what I can do to help get this crap under control b/c it's getting pretty ridiculous to say the least.
What I wasn't excited to see were the lice being beneficial stuff regarding our new MS Medical Findings. WHAT?!? lol! Wow....will there ever be a day when I won't be weirded out when it comes to this stuff we have in our heads????? I'm beginning to think not. ;p
28 APR 2009
We've been hearing a lot about the Swine flu and how some have died from this, the possible pandemic, etc. and all I can suggest to people is to do your homework. I've heard it say that once you know how to deal with a problem, the ins and outs of it, I suppose you could say, then your feelings of panic will be reduced.
Right now all the info regarding this is splashed in about a gazillion different areas, and to find the history, what it is, where it's been, where it's at now and how to take precautions is something that could take more than a few seconds, but the more than a few seconds it takes will greatly reduce any kind of panic you might feel.
27 APR 2009
The walk Saturday was AMAZING! My friend Crystal brought her beautiful baby, Nicci, Isabelle had her friend Clarissa and they walked along with me and Paige. It was a hilarious time and as exhausted as I was when it was over (needed my cane on the way back), I am so very glad we got up early to do it. The weather was so beautiful and warm and we couldn't have asked for a better day to do it! ;p
I did have to let Super Nanny (cussing is not allowed lucky you) to win this battle tho because I had to beg off on hanging in Columbus that evening. My body, primarily my legs and feet, were hurting so bad by the time we got back to my place and when the docs tell ya to take a 2 hour naps every day on days when you're not doing anything, I knew that I was going to need an extra 45 minutes to an hour added to that after walking so long.
The great news tho isn't just how much fun we had, but that I made it another block a 1/2 further than I did last year and four blocks further than the year before so my goals are working out! LOL! Next year I'll make it even further if it kills me!!!!! ;p
You're not off the hook Super Nanny...no, honey, you are not! This child is gonna give you a run for your money ~ just watch and see!! ;]
24 APR 2009
So looking forward to Saturday b/c of the MS Walk and then later on that day, heading to Columbus to hang with new friends and meeting more. ;p At the same time I'm not looking forward to having so much happening in one day and night because I know that, as tired and sore as my legs are now, it will be even worse for me by Sunday morning.
But these both are things that I want to do so much and I just know Izzy is going to have so much fun too...saying the word no is just not gonna be an option! lol!
Hang a left @ the right Super Nanny, cuz my butt will be heading left and you are not a welcome addition this wkend!
23 APR 2009
ARRRRGGGG! lol. Sorry to start it off like that, well, wait, no I'm not. ;p There is so much and yet so little to report it seems. Do my feet and hands still hurt? Yeeesss. Does my eye still feel as if it is "bulging"? Yeeesss. Do I still manage to bump into freaking walls? Yeeesss. Am I still commiting all my bad habits from 'ell? No. Seriously. Would I lie about it? Yeeesss. So, yep, still smoking, still not taking naps and STILL not carrying around the stupid cane for those times when I need it in the middle of a walk. Oh, and I quit eating as well too. Dang, you'd think with all this information I now currently have at my finger tips, I would so have it together by now wouldn't you? Ha, proved ya all wrong again didn't I?
I'd totally give the Super Nanny a serious run for her money and enjoy myself immensely while doing it!! ;p
20 APR 2009
The MS is what it is: MS. Still with the same problems as before, but thankfully no worse. I love being able to look over all that is going on with the new discoveries and how these will lead to more and more help for us all.
I've decided to stay in Ohio. As much as the thought depresses me because of how I would've been able to "relax" regarding all my health problems and not worry so much over my possible future health problems...I have to think of my daughter and her father.
She needs and loves her daddy...he is such a great father. Children need their parents in their daily lives as much as possible so...I will wait. Seven years is a long time to wait, but who knows. So many things change in even a nano second (as all us MS'ers
know very well) much less seven years.
15 APR 2009
A thought had hit me a few weeks ago. Such a blip on the radar of thoughts as it were. The kind where, just as fast as it's thought, it goes on it's merry way into the stratosphere. Ever had those? Chances are the answer is yes. But...have you ever had such a thought start to take hold? To grow bigger and bigger as the days and hours go by? This one did. And now, I am beginning to wonder and ponder and think think think like a mad woman.
Florida VS California.
It would be a HUGE thing for me since I have my Isabelle to think about. It would affect her in ways that I know, in the end, would be good, would be something she would love, but...the "mean time" part of it? Would be rough. To say the least.
I would have my Dad and Ellen in Cali to stand with me, to help with physical and emotional MS stuff. Not at all like what I have here. Ha. Family I have here are the kind that do their level best to either forget all about you or go out of their way to make shit harder. Don's family are amazing, my ex-husband's, and I do love them dearly, but they can't be "on my side" as it were, like I want so so much. Like I NEED.
12 APR 2009
Well, all the Easter stuff is over, me and Izzy are getting the hang of her foot being fractured, her school vacation will be over after tomorrow and now all I have to worry over is what the next worry will be about. lol. I thought about adding, just kidding to the end of that, then thought that I really wasn't since I am, by nature, a worrier.
Just one of things that goes along with the genes and a lot of this and a little of that called...well...life. ;p
07 APR 2009
Really looking forward to my visit to the MS Clinic in Toledo. I want help with my cognitive stuff more so than the physically side of it all so that I can get back to school. I love being home so that I can be here for my kiddos for if or when they need me, but I am also getting to the point where I am tired of feeling stagnate. Like I am stuck in no man's land or something. ;\
I'm happy, don't get me wrong, but it just gets weird sometimes feeling like I am not a part of "society" anymore...does that make sense?
31 MAR 2009
Not much to say other than I am still tired beyond what "normal" people consider being tired. lol. "Normal" people...is there such a thing? We all have our trials and tribulations so it's not like everybody else has it easy if they don't have MS. It's just so hard to remember that when you are stuck inside a body that just doesn't want to do what you need it or want it to do sometimes. I imagine others, who have different diseases reading this, think, "Well, hell, yes, I get it and I don't have MS!" Or how about someone who has lost a child, G-d forbid. There are all sorts of different things in this world that could so crazy wrong and MS is just one of them. It behooves those of us who have this crummy stuff in our heads to remember that...that we are not the only ones who suffer sometimes and maybe even for long periods of time. Does it help us physically? No, but it does help in that we can pull out of our "heads" long enough to remember to LIVE, really LIVE our lives for as long and as much as we can.
27 MAR 2009
My left eye has been getting that feeling like there is something behind it again. I can't really call my neuro about it since I just got done with IV steroids a month ago & plus he isn't really who can take care of me anymore. I guess that's for the Toledo MS Clinic...I don't see them until the end of April now so...not much to do but wait and deal. I'm pretty tired as I didn't get a nap so it looks like bed time is just around the corner. Maybe I can deal better with "it all" if I just take those stupid naps like I'm supposed to??