School

Well Today is a Hallmark day for the Michels' family. Robbin is finally going to school. He's starting in the second grade. They still don't really know what to do with him but they're going to "vamp" till they figure it out. They say reading classes will be a problem, his reading skills exceed anything the school can provide. They say their reading challenges only go up to the 6th grade and he is already beyond that (guess we've been doing Something right)
Robbin is considered "high-functioning autistic", no learning disability apparent. Let me tell you a little about my son. He was born when I was 43 years "old". He was a surprise, and the best surprise ever in my life! When he was 18 months he got the MMR vaccine. Within a few days he was admitted to the Hospital with a high, spikey fever and an "undiagnosed virus". During the 5 days he was there I never left his side. I became so ill that when he was released they had to take ME to the car in a wheelchair, I was too sick to walk. But he recovered just fine, except that he did not speak a word until he was 4 1/2. He made noises, laughed, cried, but no speech. His first words were "I Love you" to me. Then it was my turn to cry. Of course now he is the total chatterbox! He is still learning to express things like feelings, and the concept of I-ME-MY is still needing work , He'll say Robbin is happy, not *I* am happy. We've been homeschooling him, waiting to be finally settled in a place where he can stay in the same school, not wanting him to have to adjust and readjust to new schools...seeking stability in his life. So finally we've done it, and he started school today. He came home crying his little eyes out, he didn't want to leave school to come home!!! Tomorrow will be his first whole day (today was just for introduction). My baby... a second grader!!!
I'm not to worried about it now that he's ben and Rob has scoped it all out, there are 4 kids in his class and they have 1 teacher and 2 aids, so he will be supervised the whole time. They want to mainstream hin for some classes but there will be an aid with him the whole time. You see, one of the things about Robbin is he has no concept of "danger", if a stranger approached him he would go with him. He would not think it was anything but a game until he was hurt or worse, and their is so far no way to teach him NOT to go, that there is Danger there...he just doesn't understand it. That was MY fear, that he would not have someone the whole time with him, well, that is being put to rest, they will have someone with him every minute he is at school. Heck, it has taken us this long to get that crossing the road alone is a no-no! I think this will be good for him, now to keep MY nerves in check LOL!!! And No, he will NOT be going in the us, Rob will walk him to and from school, it is not very far from here, another reason I like this place.

Open MRI

Well, I've been poked, prodded, pierced, punctured, buttered and bar-b-qued. Now to await the results. Yes, yesterday I had the open MRI as well as bloodwork, yay me. Actually, the open MRI was a lot easier then the closed one, I was able to have my knees elevated which made it, and ME, way more comfortable then the closed one. I actually snoozed!!!! Strange thing is, I could *feel* the magnet revolving around my brain, I could feel it "dissecting" me, bit by bit. Not uncomfortable, mind you, but very, very strange...
And I'm back on the Copaxone, Rob *just* gave me the first shot...woohoo, can't you feel the electricity? I'm also on a new pain med, new for me anyway...Ultraset...I took one last night and I feel pretty good today. I slept well, actually rested. Most times my sleep is not restful, too busy in my dreams, I awake exhausted. But last night I did rest. That helps...immensely.
I also have a new game I'm playing, SIMS2. It is absurdly addicting. You basically play God, creating your SIMS and controlling practically every aspect of their lives, from what job to take to when to take a leak (or mop up one LOL) I have the first SIMS games, usually play SIMS Making Magic. This is totally different, much more challenging. Much more involved. I spend so much time on the PC that it helps to have something fun to play...I've been playing Diablo for years, time for something a little less violent, more mellow. Oh yes I DO still play Diablo, but less. I also love the arcade type of game, Love Zuma, I find it very relaxing, and I Do firmly believe that game playing keeps the mind sharper, and Lordy knows mine needs all the help it can get LOL. I think the games also help with manual dexterity. I want to keep as sharp as I can, I know I've lost brain points over the years, I used to know a thousand jokes and now I hardly remember any. I used to pun all the time, now I feel great if I come up with almost anything witty, when I get a laugh it feels wonderful. Makes me feel a bit like the old ME. I miss me. I know I'll probably never get *me* back, but I can work on not losing any more of *me*
That's also why I write. Maybe some of my memories will surface and be saved for when I cannot remember them anymore, and this way my son can know a bit more about who Mommy is, and was. I don't know if anyone reads this, certainly nobody has posted a comment. But it really doesn't matter, I write for ME and for Robbin. And if anyone else is interested enough to slough through all this, I'd love it. And if perchance they learn something, then I am Honored to have ben able to pass it on.

MS Site

Here's a link to a very well put together MS site, there are links galore and tons of info on MS
http://www.mult-sclerosis.org/

Meds

I'd like to clarify something about my meds...Yes, I AM taking a more natural approach, but also Yes, I am going back on the injectables as the MS is progressing some and I'd like to keep it under control (yeah...MS control...I know that's an oxymoron...). I am also taking something for pain, as the supplements can help me in many ways but pain management is not one of them.
I'd also like to tell y'all that I have had a friend working on our website and I think she's done a splendid job, check it out at http://www.twinflames.com, she has a link to her biz on the links page, if you or anyone you know needs work on their site check her out, she does awesome work and her prices are beyond reasonable, especially for the amount of work she puts into it.
Now...on to other things...it is COLD!!! So cold *I* even feel it!!! We are nowhere near the center of this storm area but we did get about 3" of the white stuff and it is COLD out there!!! Rob has been ferrying kerosene to keep us a bit warmer, the furnace doesn't quite do it, add in a nice hot kerosun and we can maintain the warmth. Funny thing is when I finally DO get cold, I have the darnest time trying to ge warm again...it is like I am either too hot or too cold, no happy medium here (Ok make your own jokes there...).This house was definately NOT built to keep hear in, but rather to stay cool in hot weather. Funny thing is there folk seem to think that just because we're S. of the Mason/Dixon line, we're in the South, well ya know what? We're Not! We're still where there is very cold weather. The "South" is about 500+ miles South of here!!! But they've built these old houses with Summer's heat in mind, not Winter's chill. Big open rooms, high ceilings, and this house doesn't even have a fireplace, or any evidence that there's ever been one!

Rant ~ sorta

OK, I feel better now, still angry but a night's rest helps,,,Now, what was/am I so mad about? I am a 50 year old Woman, WIfe and Mother, yet when my Dr. writes me a scrip for some much needed pain meds, the State of WV makes me (anyone else, too) go through a "waiting period" before allowing the pharmacy to fill my Rx!!! Ok, I can see it for buying a gun, but why for a perscription? What am I going to do, threaten someone with a pill? Why, for chrissake must I wait 2-3 days to fill a pain Rx? I don't get it. I feel like I'm being treated like some sort of criminal because I am in pain. I have MS, OF COURSE I'm in pain!!!
Ok, rant over. Colorful language spared...mostly bcause I'm in too much pain right now to write it all out. You get the gist of it.
TTFN, I'm going to go lie down.

I know

It has been a few days since my last entry, and I must warn you that my next entry might be a bit on the sensitive side, meaning if you are sensitive to language, don't read it. I don't write F*&$#*G if I mean Fucking. I figure we're all adults here. I spell it out, I don't mollycoddle you. Like the WV Government does ME...Hence the future rant. I don't have the energy, and I am in too much pain, to write out the rant right now. But know this, my thoughts for the rant have some very colorful language, and that is likely to come through. I am thoroughly incensed. I'll write it out later. Hasta manana.

Sleep

I actually got allmost 6 hours sleep last night!!! YAAY!!! I got up at 5, rested more then I have been in what sems to be years, checked email, put on he coffee, went upstairs and took a long hot shower, came down and brushed hair and teeth (different brush, mind you), and now it is just past 6 in the a.m. and here I am writing!!! Rob is up already (I waited for him to wakey wakey before I took my shower), he is a bit wierded out having me up and around this early, this is usually *his* time...
Yesterday I was SOOO tired I sort of "passed out' for about 2 hours in the late afternoon, and that plus the night's sleep have done wonders. Also, I got my shipment of Sam-E, I know that stuff makes me feel better, The Dr put me on Lexapro instead, but I an off that now and back to the Sam-E, which will also help with mobility. Yeah the stiff is pricey, but if you haunt certain websites you can often find it at a better price.
I am really looking foorward to my Neuro appt on Tues. I banged my head...hARD..on New Year's Eve (No, it was not the bubbly, I tripped and fell backward and smacked my head in the metal legs of my office chair, it still hurts when I brush or wash my hair) I want to see if the good Dr wants to do an new MRI because of it, it should not hurt this long. Answers..I'm going to get some answers.
I'll probably post more later today, right now I'm gooing to wrap myslf around a cuppa java and watch GMA.

Dinner

Today I was finally able to eat. I made a humongus salad and added ham, cheese, olives, radishes, baby spinach, carrots...in addition to the usual salad greens. And I was able to eat a big bowl...
I slept today, too, almost all day! I didn't get up until mid afternoon. But then again I got about 3 hours of sleep last bight, no reason, just couldn't sleep.
Oh Lordy!!! I'm watching Wife Swap (Ok, guilty pleasure but it is hysterical)
These two are going to make sparks fly...
The good news is out website is taking shape. Dawn uploaded it today, she is doing a fantastic job...I am So pleased...(check it out!) If you ned a site done call her please!!! You will be glad you did!!!
Our site BTW is http://www.twinflames.com
I am So happy with what she is doing with it!!! Finally ALL the info is up to date!
Well. going to go watch the wifeys...

Exascerbation

I am having a bit of one, not as bad as the last one (at least not yet) but I have the "hug", and twice I awoke in the middle of the night shaking like a leaf. Almost like I were hypothermic, but I was not that cold. I was cold, but certainly not cold enough to be shaking like that!!! It was strange enough to feel cold, I was in bed with two comforters and my sweet bedwarmer next to me, and it was about 65* which is usually perfect for me. So why the shakes? Also, the soles of my feet are quite numb, and my hands are having a tendency to go numb. And insomnia. And PAIN. I hurt. I just ache all over lke I had a fever (fever...cold..make up your mind!!) I went shopping yesterday with Rob and by the time he put the groceries in the truck it was all over for me, I didn't even have enough left to go to the chinese buffet...now you have to know THAT is Serious!!!!
I shamlessly stole this from another MS'er..the notion of "energy coins" When I awake, I have a finite number of energy coins to spend for that day, and when they're gone, they're gone, so I have to be choosy about where I spend them for that day. Rob *jokes* that he can hear the last coin drop...and he is invariably right...I am SO glad my neuro appt is next Tuesday.
Well I'm off to bed again. Got to rest a bit more. I could not sleep last night, I think I got about 2-3 hours...I'm going to take some valerian and eat a banana and curl up in bed for probably the rest of the day.
Later...same day. I took 2 valerian and ate a banana and slept until now. I feel quite a bit better, still have the tingling and the "hug" and all that, but feel less pain and more rested. Still not up to Marathons though...but better.
Same day. I got it together to make dinner...but do you thing I could *eat* it? Not on my life. I just sat and looked at it and eventually put it in the fridge. Am I hungry? All I have eaten today is the aforementioned banana. And that was hours ago. I HATE wasting food, it goes SO against my Cancerian nature...but I just can't do it, I just can't bring that food to my mouth. Is it physical, mental or emotional? Yes. Sorry to say but if I had a toke I'd probably clean my plate, but as it is the only way I can clean it is to dump it. Eggs Benedict with Country Ham no less...and you cannot reheat a poached egg...crap. Rob said his was delicious but so filling he cannot eat mine too (a least it would not be wasted) (And those were my last two eggs) Crap. I'm going to see if Robbin will eat it. Great, he says he's not hungry either. Crap. Rob put it in front of him to try it anyway. Please let him eat it.
Oh YAY He ate aboout half~ Now I feel beter about it, at least it wasn't wasted. I will try to get something before I go to bed. Maybe some soup? IF nothing else, I am chugging down juice...mostly V8 & grapefruit.
Nighty Night now.

More MS

I think sometimes the strangest symptom is the hot/cold reversal and how sometimes one part of my body will be cool and others almost burning in patches. My right arm and shoulder, for example, most of the time feel very hot, no matter how hot or cold it actually is...like it has it's own themostat and someone turned it way up. Also, now most of the time I cannot really feel the cold. It can be 40 and I'm totally comfortable in shorts and a tee. But then again if I put on pants and a long sleeve sweater, I'm just as comfortable. How can that be? Usually the only thing that gets cold is my feet. I have noticed many people say their MS symptoms are on their left side, mine are on the right side. This is such a strange disease, no wonder they have so much trouble diagnosing it. Here we might have 100 people with the same malady and no two experiencing the same symptoms.
Another thing that bugs me quite a bit is when I can actally feel the lesions on my brain, they itch...but it itches inside my skull!!! I can sit there and almost frantically scratch my head, and it almost feels like I am appeasing the itch, which is impossible since the itch is under bone...very strange.
Well it seems we're going to have a visitor soon, so I'll logout for now :-)

Lethargy

Well, it seems we can add Lethargy to the ever growing list of MS symptoms. Not fatigue, mind you... Lethargy. I have read posts from other MS'ers that talk about it, but it was never brought home as definitively as it was today.
There is a group, worldwide, known as the SCA (you know, where we dress funny, speak in fake English accents, and pretend that this century has not yet arrived). Not too long ago I would never even dream of missing an event. Yet today, not 3 miles from here, was a big event. There were people there I have not seen in years, 1 particular friend who I know drove over 3 hours to attend, yet I could not get it together to go. She drives three hours, and I cannot go three miles. And there were SO many reasons I should have gone, but I just could not. I could not even think of being so surrounded by people, even friends...and I was/am having a mild exascerbation, the soles of my feet are very numb, walking and standing a task, and I know I would have to have spent much of the day on them...walking staff or no, I just could not do it. I hate that. I really do. It is SO Not ME to Not go!!!

Musings on a Monster

The Monster...Tsunami. How can I even find the words to express my feelings there? I am, in this case unfortuately, an Empath. For the week before the Tsunami hit, I dreamt of disasters...over and over...mostly involving water. Little did I know, could I know, or would I ever have imagined the extent of the real disaster. My dreams were puddles in comparison. I cry every day watching the TV, reading the news. I cry for the children who will never again see their parents. I cry for the parents who will never see their children. I am crying now. I pray for them all. I hold my son, for all the Mothers who will never hold their beloved children again. I cannot even begin to imagine their pain. I just sit and hold him. I Thank God he does not know why.
For years the "new-agers" have been talking about "Earth Changes" Well, I think this certainly fits that...
The stories that come out of there...stories of loss, mixd with stories of miracles...are amazing. The baby who was found floating on a mattress...the Mothers who could not hold their children as the unforgiving waves swept them away....the little girl who survived when her entire class was taken...all amazing, mind boggling. I wear a black ankle band now, and will wear it as long as I live for the Mothers, the Fathers, the Children.

throat

So, last night I tried to take some pills with soda, hoping that would work. Well....I was taking a vit C and a b-complex. One of them caught sideways in my esophagus, causing me to choke and hack and spew and yukk...it took a long Time to displace, leaving my poor esophagus shredded so badly that all night I fought fever and today I cannot talk at all, and swallowing is a painful to say the least...guess I'll stick with beer for that...I'm not even going to try to take anything today, it hurts too bad, if I got another one caught...well, I'm just not going to risk it. Funny thing is, with my throat all messed up, when I DO talk, I actually *sound* like Yoda!!!!! HAHAHAHAHAA too funny!!!
I watched the Montel Williams show today, he was talking about his MS, I think I have seen that show before, but it prior to my own diagnosis...sure makes a difference in perspective...he gives me Hope, in a sense he's almost a Hero for me...
Speaking of Montel, there is an interesting webpage I'd like to share with you....Famous People w/MS
http://www.mult-sclerosis.org/famous.html I think you might be surprised at some of the names you see there...
I will probably blog along as it comes to me, since I have led quite a diversified life I might write on anything from singing in Spain to soaking in Seattle *grin* If I talk about someone I will use their first name but now their last..not for their privacy, but because they just might not like what I have to say...(and you know who you are, right val...buffy...tonya?)
Matter of fact, I'm pretty darn sure they WON'T like it at all...but then again they are past and I might just let the past stay dead and buried.
There are SO many GOOD things in my life to pass on to y'all...you also might notice a distinct lask of talking about my birth family...there's good reason for that. My ONLY family now are my husband, Rob, and our son, Robbin. Everyone else in my estwhile family is dead to me...their choice and I respect it, partially because I never want to hear from them again. Now, Rob's family, well, they're far away in Fla...his sister does have one wonderful talent, she makes awesome hot sauces...not that she "needs" advertising, but her website is http://www.katoproductions.com. Check out the Chocolate/Habanero bars, they're just TOO good!!!
I have been *gently* reminded that birth family is not one's ONLY family. And Yes, I DO have an extended family, a chosen family...and they are the most awesome support group that anyone could ever ask for. Thank You..and YOU also know who you are...(right Kathy? Joyce? Dodee? Barbara? John? LJ? Susie? Justin? Mikey? Tara? Jimmy? Patty? Sandy? All my friends from the MS lists?) There are more but I'll stop now, I think I've made my point.....

MS

When I first got my diagnosis of, MS, like many, I thought it a death sentence....it is not, actually, it is a relief. Al those years of knowing something just wasn't right, all those strangenesses (ok so I know that isn't a word...deal with it, it *should* be), and suddenly I have a reason for it all. Fist thing, I went on the drugs they tout..Rebif, an inection...self imposed no less...3x a week. Rebif costs about $150 US per shot, and I was also on Neurontin. Well, I went off both the same day...after I threatened to end my life... you see, the Neurontin made me think strange and bad thoughts, an the Rebif made me want to act on them. My Father was a suicide, I know what it does to the surviving family....and I would Never do that to my family...Bu after spending the night in the ER I called my Neurologist (who usually has a 2-3 month waiting list but miraculosly got me in the next day) he took me off both meds as of right now and put me on Copaxone. Now...Copaxone is a daily shot....also done at home...and those shots hurt!!!! The Rebif felt like injecting something acidy, but the Copaxone left a painful lump at the injection site that sometimes took over a week to go away...and since it is a daily thing, anf you are supposed to rotate injection sites, some sites are not useable even after a week...so I ended up with lumps all over my belly, legs, hips and arms. When we moved back from NY to WV, it took awhile to get my Insurance straightened out and tranferred, so I ran out of Copaxone. And I could not afford the $1,500+ to get more. So I went off it. And you know what? No changes. The only difference is a bit more fatigue and no nasty lumps. My Right hand sometimes goes a bit numb/tingly, but if I shake it and rub it, that goes away. The soles of my feet are also sometimes numb, bu that is not a change from when I was on the meds...actually, my MS hug has gone away....
Now, for y'all who do not know what an MS hug is,and believe it or not I had to explain this to the Neurologist, too, it is like someone very strong coming up behind you and grabbing you around the waist and squeezing. And not letting go. And when I went off the shots, they let go. So then, as I was still waiting for my insurance to get to a Dr here in WV, I ran out of all the other perscriptions...and as I did, I just plain stopped taking them....all 16 of them. Yes, I was on 16 different perscriptons!! And some of them, like celebrex and ibuprophen, have since been found to be bad...very bad...
So I decided to go the natural path, and studies, and researched, and so far, so good. I am taking Vit C, E, B-complex, B12, Flaxseed oil, Oil of Evening Primrose, Omega oils, Ginko, Bilberry, Calcium w/D, a multi-vitamin, I am also starting Cat's Claw and Green Tea. I also cook with Olive Oil and/or real butter And I eat at least 1 yogurt a day,and take a daily meal-replacent shake, and use lots of garlic when I cook. I try to cook with real food, not processed stuff...Friend Dodee took me to the store today, I spent quite a bit, and 90% of it went into the fridge or the freezer...she was amazed. Sardines are also awesome...whether you like them or not they are SO good for you...I eat mine with salsa and saltines. Hot salsa. I also eat hot peppers. The Capsaicin dulls pain. The beer dulls the pain from the hot peppers...
And Yes, I have started "toking". The pot really helps. Now, mind you, I do not do it very often, and Never in Robbin's presence. For one thing, I suffer from SO much fatigue, that even if/when I have the energy to cook I usually do not have the energy to eat. So I toke, and get an appetite, and eat. It also relives a lot of the pain. Illegal? Yeah, I know. It should not be. Not medically, anyway. I was never a pothead. Never even tried it.And now that my order of Cat's Claw has arrived, I probably will not have to anymore, since Cat's claw is good for pain. Alcohol was my "drug of choice" When I was younger, scotch was my friend. After years, I guess I developed a resistance. Finally, I went to wine and beer...now, a scotch would put me under the table in no time flat...I'd be flat...(Ok well, rounded but horizontal). I just cannot tolerate it anymore. But I can have a beer or two...and I do....now don't freak from this next...but I take my pills with beer. If I try to take them with anything else, I choke...and spew. There is something "wrong" with my throat...might be an MS thing, might be just my own strangeness, but if I try to take even an aspirin with water or anything other then beer, it gets caught in my throat...beer has just the correct amount of carbonation (you would not believe how long it took me to remember that word) (more about the "word search" in my head later...) to be able to swallow the pills. Some people judge me harshly about this. Oh well, they are welcome to walk a mile in my Birks...Even tonight Rob had to stand by helplessly as I choked on pills...because even with the carbonation sometimes they get stuck in my throat and there is nothing anyone can do, he stands by and holds me as I make horrid noises and spew into the sink trying to dislodge the offending pill...the worst has been the Omega-3 capsules...full of a very, and I mean VERY nasty fish oil...they stick, and being gelatin burst fairly easily. and the oil goes down into the throat and UP into the taste buds...Oh Gawds is that NASTY!!!! As it is, right now I have a Vit C pill stuck..waiting for it to dissolve enough to dislodge...
Well I guess that's enough eyestrain for now...

I'mmm Baaaack

Ok, I did it!! Now I can start to write out some of these thoughts and experiences...Be Afwaid, be Vewwy Afwaid....

Something along the way of an intro

AlllllRighty. First, I am Da YodaMamma...many from the NW will remember that name, and now you know it too *grin*
I am 50, and was diagnosed with MS on April Fools Day, 2004. On April Fools Day 1996 I found out I was pregnant with my one and only offspring...the most beautiful little boy ever born (but of course I *am* a bit predjudiced) He is now 7, and considered High-Functioning Autistic, because I was *stoopid* enough to agree to give him the MMR vaccine at 18 months. One of the few things in this life I truely regret. HE came down with, and was hospitalized (for FIVE days) a spikey fever and an undiagnosed virus, which the good Dr's tried to tell me was Mono..in MY little boy? I think not. My sweet son is probably the reason I am still alive, even with the things that have happened since he has always been the Light that gives me a reason to stay here. My husnabd does that, too, but we went through some rough times in the last two years, during which he was not always at my side.
As far as MS, so far I'm living with it, I've only had one bad exascerbation so far, I lost all feeling from my ribcage down for about 3 1/2 months.
In the last week or so I've had dreams, not recurring but continuing, where I was pregnant... now folks, I'm 50, and after I squeaked Robbin out I slammed the door tight, so no baby booboo here...I'm just too old for that...one is quite enough, especialy this one, he is a handfull I'll tellya!!!! Sweetest boy in the world but.....he....just.....never....stops. I don't know if I could handle more then one :-)
Anyway, I asked my Psychic husband and a few of my witchy friends about these dreams and the overwhelming response was YOU NEED TO WRITE. And what? the next day I get an email that brought me to blogging. Blog. What a strange word....not an especialy pretty one, either..but if I can use it to get some of these thoughts and experiences out, then I love it.
I'm going to log off of it now to see if I can find my way back in...you'll know. If this is the only post *ever* then I didn't.