Re: Donna in PA....Re: I hate to summer months...Terri (from Sharon)

July 24, 2011

Sharon,I wouldn't say that the cognitive issues have completely gone away, can't say that they are getting better either... As I was sitting there yesterday, with over 16k songs to choose from, knowing that everybody there, or most everybody there loves country music.. I'm scrolling through the country artists and couldn't remember a single hit from any of them, and I look at one and think... now was that a hit, or just one that I found on one of the CDs that I liked, but never had any radio play time??? Then I played one, by Strait I believe, named "Girls Don't Fart".. seriously.. the guys all howled but had never heard it before.. and Strait has gone down.. I think it was he who had the last concert at the something they tore down to rebuild in Texas.. Or someone would come up and

ask for a particular song and.. well.. I know I looked like an idiot, cause I could have sworn that I had what they asked for, but couldn't find it anywhere on the hard drive.. BUT.. the music still turned out great.. and this year rather than hearing.. "Could you bump up the volume just a little bit, we can't hear it from over there".. I heard.. "Could you turn it down just a bit, cause we can't talk over there without yelling at each other".. I loved it.. Those 540 watt speakers that Sony builds as an iPod, iPhone docking station that just happen to have a PC input jack (goes from headphone jack to headphone jack.. unbelievable) really do produce some volume.. I did actually have to cut back early on because some of the songs would distort and the higher volume.. by the time I was done cutting back on the volume, they were just a little above half output volume!..And some things still don't want

to come out of my mouth the way.. easiest to explain is that what falls out of my mouth when it's open, is not the same thing my brain is saying.. I think I was looking for the word "transfer" yesterday, and had to explain that I wanted to get this from here to there in the long round about way, because the word "transfer" just wouldn't come out my mouth.. And I do believe I was patted on the head or shoulder more than a couple of times yesterday.. in the "it's okay granny, you're allowed to forget" manner...But the cooling vest was a blessing for sure..Macaroni Salad Dressing1 quart of Miracle Whip (has to be the brand)1 can carnation evaporated milk (has to be the brand)3 pounds of elbow macaroni (Muellers if you can find it.. San Georgio will work, Barilla is last choice)1 Cup sugar, give or take1-2 tablespoons of yellow mustard

(French's preferred, but Plochman's will work too)1-1.5 tablespoons of Apple Cider Vinegar (white vinegar will not work at all)Salt & Pepper to taste.. (though I use probably about 2 teaspoons at least of Salt, and liberally, but not too liberally pepper the top of the dressing before I start to mix.)..Milk is the last thing added.. and it use to thin the dressing to a more runny consistency.. but for some reason Miracle Whip now seems to firm back up to nearly the consistency it came from the jar in)The quart & can aren't estimates for 3# of macaroni.. but the rest of the measurements are guesstimates.. my mother never measured, and I learned from her.. 2 tablespoons of the mustard might be too much.. so start with one.. you can always add, but it's hard to take away, or fix it if there's too much..The results you want is sort of a sweet and sour

type little bit tangy. again hard to explain.. If you get a little too much vinegar you can always fix it with a little more sugar..Yes, I know.. the is heart attack on a plate, as would put it.. The other ingredients are somewhere between finely chopped and coarsely chopped celery.. Onion.. about a half cup, I'd say, chopped fine, but not minced ( tends to mince more than I'd like -- If I were doing it by hand, I'd slice the onion, the lay the slice down (or stack the slices) and checkerboard type cut them.. cut one way, then cut the other direction.. less than a quarter inch between slices if I'd have to guess.. kinda want the celery to be the same as well.. unless of course you have a hard time chewing the celery, like I do.. the finely chopped would work better..And this is where the heart attack part comes in.. for three pound of macaroni salad.. you'd dice

up about a dozen and a half hard boiled eggs.. could save a couple if they peel nicely for you, to slice thinly to garnish the top of the macaroni salad if you want to spruce up the finished product.. and sprinkling just a bit of paprika across the top of the salad if you do the sliced egg.. makes a pretty appearance and doesn't change the taste.. Oh.. and fingers must go in the dressing for the tasting portion of the procedure instead of a spoon.. you are allowed to wipe of the finger with a damp cloth or wash your hands if you choose.. but my mom didn't.. (might have wiped the finger on a damp cloth, and re-dipped after she made adjustments).. but spoons aren't allowed during the taste testing phase.. (seriously.. something about the metal of the spoon or the wood, will change the taste of the dressing by the time it reaches your mouth.. mine never comes out right if I do the "correct" thing and taste with a

utensil...Hope this screwed up recipe works for you.. and that you all like it if you try it.. HUGS|)onnaTo: "MSersLife " <MSersLife >Sent: Saturday, July 23, 2011 2:09 PMSubject: Donna in PA....Re: I hate to summer months...Terri (from Sharon)

DonnaYou said a few days ago you were having some cognitive "stuff" going on. Has that resolved itself? I hope everything resolves quickly and it isn't necessary to have the Solumedrol. But if that's what it takes..... What goes in the dressing of your macaroni salad? I would love to have your recipe. Mac Salad is always a favorite around here:)Big huge COOL hugs for you! SharonThis email is a natural

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made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: "MSersLife " <MSersLife >Sent: Saturday, July 23, 2011 4:51 AMSubject: Re: I hate to summer months...Terri (from Sharon)

Okay.. so how is it, that in Arizona you get MID 90s this past week, and we here in Pennsylvania (at least SWPA) indexed over 105 some days and 110 yesterday. I could run absolutely NOTHING on one whole side of my house (something to do with it being a double wide I'm sure) otherwise the breaker popped.. as it was, JUST the A/C running on that side of the house, and cooking a big mess of macaroni on the stove, kept the A/C causing the breaker to pop.. even picking up my cordless phone to use it, would pop the breaker... Yes, the A/C was working that hard.. That won't happen today. The A/C is one it's very own circuit now, and just told me a few minutes ago, that it seems the A/C is working more efficiently this morning.. He didn't finish until almost midnight last night.

We started preparing for the annual blowout in the mountain today, yesterday morning. I made (well did the foot work) the macaroni salad here yesterday, though it is actually one of 's contributions to the picnic. All the years before, she did all the prep at her house, and then when I arrived I'd mix up the dressing and put it all together.. but it just never tasted as good as it does when it's had a chance to sit and coagulate overnight [Just like KFC's cole slaw MUST sit at least an hour before serving, to get their "taste"] So we decided that this year it would get made here the night before and brought there today.. Then the other chore was the cabbage rolls that needed to be made. Those weren't going in the traditional oven, but an electric roaster, so weren't a threat to elevating the temp inside tremendously.. In any case, I made unplug his fountain outside, set

up a small table to place the roaster on (didn't want to see the squirrels lifting the lid of that to have a taste.. LOL).. and plug the roaster in out there on a heavy duty cord.. Heat stayed outside, and roaster was in view of my chair in the living room at all times.. And for some reason, that no one can figure... The microwave is in plugged in on the last receptacle on the kitchen wall... and when the power goes off on the living room side of the house.. so does the microwave, but nothing else on that side of the house.. BUT if the roaster is plugged into that receptacle, and someone uses the microwave, it pops another entirely different breaker.. but not this side of the house.. (that's kind of confusing, and a little scary to a person who knows soooo very little about wiring.. and grew up with a dad who used to put the penny between the old fuse type things.. "to hold it" until he could get new fuses -- and we were taught in school what a fire

hazard that was) I wasn't so much worried about "fire" -- because that's what the breaker system was designed to prevent -- but that the circuit would pop while we were gone today, and the poor puppies would be in this house, as hot as it could/would get (not to mention Roxie) while we were gone.. and Boxers just don't do real well in high heat.. heck Zucco pants all the time at 72 in here now.. 's boss, sent home a brand new A/C unit for my bedroom this week as well.. under threat of termination for , because knew he was going to refuse to bring it home... I've been having trouble since the end of June, beginning of May.. Still not quite sure what is going on, but I have talked with the neurologist's office and and MRI and Kidney Function test are being scheduled. I started myself on B-12 sometime in June, thinking that it couldn't hurt, and might very

well help restore at least a bit of something.. and who'd have thought micrograms of anything could hurt anyone.. and I really thought I was getting some feeling back in my right foot.. minimal at best, but a few little tinglies instead of numbness.. but the tinglies continued to get worse, and the numbness started to spread up my right leg, and into my side.. some of my butt cheek was affected, but not all of it.. I thought it was a bit strange, and did question it being an exacerbation.. until I looked at the B-12 bottle.. on the back.. turns out that 2,000 mcg is 33,333% of the RDA for B-12.. and I thought OMG.. I've done over did the B-12, cause the bottle did say to take ONE daily!!!.. So I went off them immediately, and called my neurology nurse.. explaining what had been going on, and that I had stopped the B-12.. and that if they thought it could be anything more serious.. to give me a call back, otherwise, being the week of the 4th.. not to

consider me a "top priority" in callbacks.. and I'd know that it was the right thing to do and all that kind of stuff.. Then by the beginning of this week, all this crap hadn't cleared itself up, figuring that my system had had enough time to clear itself of the B-12 overload, and things weren't improving, and in fact seemingly to get worse.. BUT confusing.. I'd wake up fine in the morning.. feet no more numb than they usually were.. well maybe just a smidge.. and I'd be fine and able to transfer and all kinds of things (now after the UTI in June, I wasn't progressing with the Ampyra, as I had been before the UTI, but hadn't lost anything either).. but in this story.. by late afternoon, very early evening I was soooo numb, some days, that I couldn't stand it, and had to come lay down for a bit, if not the whole evening.. bumped the temp on the A/C down to 70 thinking that maybe it was just about the time the temp, in

the house, would start to rise that I'd start to have the increased numbness.. which made sense.. increasing heat sensitivity and all.. didn't wipe me out with fatigue, just made the numbness worse (which is a bit different than the heat used to affect me).. All last weekend he kept trying to get me to go to the ER.. and I kept fighting him on that.. told him I'd call the neurologist on Monday.. and I did.. at some point I was talking on the phone to someone.. and decided to look up the side-effects of the Ampyra again.. just in case I missed something the first go round.. but for the common ones, I hadn't.. balance, headache.. not a problem.. (I can use the walker for balance, if my walking ability improved.. and I'd had balance issues before the Ampyra anyway).. The I looked way way way down the list, to the "rare" side-effects to find that numbness on the right side, no less, was a rare side-effect.. That

definitely set me in motion.. so Friday night last, was the last time I took the Ampyra, and then placed a call Monday morning even before hours, and left a message.. the P.A. for my neurologist called me back early afternoon.. No ER trip, thank goodness, but he did want a new MRI of the brain, the Kidney function and a urinalysis, to make sure the UTI had completely cleared up.. I told him that, I DO keep AZO strips on hand (since the first UTI) so that if I exhibited any signs of one, I could test here at home, rather than run to the doctor immediately or an urgi-care.. if they didn't turn up positive, then there was no sense in making an appointment with any doctor, because they wouldn't be positive in the office either (turns out that most doctor's offices use these same strips to test in the office, before sending the specimen out for culturing) .. So if they were that accurate in the doctor's office, they'd be that accurate at home, if all

the same procedures were followed... So I told him that I had already tested that morning or the morning before, but that I would get a new set of strips (they only come 3 to a box) and test again that evening or the next morning.. if that came up positive, I'd call my PCP, and get in to see him for script right quick.. but if not, then I'd wait, because I wasn't having any symptoms.. Well EVERYTHING was negative on this test.. leukocytes & nitrites, so UTI isn't a question now.. But I did tell him that there really wasn't any more super rush, for me, for an MRI, unless he felt that there was.. because the symptoms weren't getting any worse, right now, though they weren't getting any better either. AND with this picnic today, they weren't getting me in for solu-medrol until Sunday anyway.. So.. I'm not not quite sure which way is up right now.. is it the B-12, is it the heat, is it the

Ampyra, or is it an exacerbation or any combination thereof? Guess time will tell.. In better news.. I did contact my local chapter of the NMSS and asked for a Cooling Vest.. it arrived yesterday.. They use Polar Products @ http://store.polarsoftice.com/polarshop/pc/home.aspto order, well whatever I chose from the site.. and I chose the Kool Max Vest Kithttp://store.polarsoftice.com/polarshop/pc/viewPrd.asp?idproduct=36 & idcategory=121it came with two sets of gel packs (that actually do freeze solid, just checked them in the freezer this morning) for each of pieces.. the neck thing and the wrist thing as well as the vest.. I'm all set to look like a fisherman with that vest today.. We were trying to figure out just how the heck we were going to keep me from completely wiping out, outside today, when they were calling for 97 degrees up there in the mountains for

today.. they were setting me & the music up inside the garage, all block & concrete, for the coolness.. they bought a 20 inch oscillating fan to keep blowing on me, and had the hose ready to wash me down if the temp got too high.. as well as whole bag of ice just for myself & my shaved ice.. LOL.. I think I should be cool enough to make it through the day.. at least I sure hope so.. And that, as Harvey would have put it, is the "Rest of the Story".. .. no wait.. the rest of the story will have to wait until after we see how things go today.. and I'll post you just as soon as I recover from a long day.. LOL.. Now it's time to raise my sword and plunge into the fray!HUGS|)onnaTo: "MSersLife " <MSersLife >Sent: Saturday, July 23, 2011 12:24 AMSubject: Re: I hate to summer months...Terri (from Sharon)

How hot has it been where you are, Terri? It's been in the mid 90s here and our humidity is up. The past few days have been a little tough for me with the heat. I keep a fan blowing on me all the time and a water mister to help cool me down. When I get too hot I go and wet my head down and let the water drip all over me. All those things help me. I don't have AC. We are off-grid (solar and wind power). AC can't be run on an off-grid power system, unfortunately. big cool hugs SharonThis

email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

July 24, 2011

Thanks for the recipe. I'll have to try it soon! I loved the part about having to use fingers:)It sucks to forget the words, doesn't it? Well, for me the word isn't truly forgotten--it's just misplaced temporarily. lol How's your weather now? Is that horrible hot spell over with yet?hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its

individual character and beauty and in no way are to be considered flaws or defects. To: "MSersLife " <MSersLife >Sent: Sunday, July 24, 2011 3:15 PMSubject: Re: Donna in PA....Re: I hate to summer months...Terri (from Sharon)