Who do I think I am? nd what kind of nerve do I have...?

I have MS. It causes my body and mind to malfunction, if you will. It can be scary when I try to do normal everyday things, like put my make-up on or write a letter, because I can't execute these things any better than an 18 month old child. My hands are shaky or my body is having involuntary movements of something similiar to this situation. Is this problem going to get worse, or will it stabilize for good? What is my life going to be like when I am trapped in this body that I have no control over? And then I am reminded that others have it worse. Like a child with Rett Syndrome. She (rarely male) has something to say but can't say it. Or wants to look at something and can't reach for it, and even if she could her hands wouldn't hold it very well so she could exam it closely. Rett Syndrome is not a mental problem. The brain itself is hunky-dory as far as function, thinking and processing. Imagine you can't tell you mom that you like her dress, or that you want your hair in braids today, or that you're sad and just want to give her a hug. Many of these things can be understood, in general terms anyway, by those who are with her everyday, but this kind of communication leaves much to chance. What if you enjoy dessert but want more whipped cream? Or more pepper on your chicken? How is something so specific communicated? I get so frusterated (as do the people I am trying to communicate with) when I know what I want to say but the words won't come out. How do I tell my daughter to put put her shoes away when all I can do is point at it, and keep pointing until maybe I can get the word 'that' out. Who am I to feel sorry for myself when comparitavely I have it easy? And how can I in good conscience spread MS awareness and hope people will help find a cure for this disease when Retts is something much worse that most people have never heard of?

Crazy, I am

I feel a wee bit icky. Not nauseous exactly, but tired for sure. I had to work 9:30-1:30 today, Sunday, and then I came home and to the pool for about an hour with Ammi. I watched tv for a little while, and decided to take a quick nap before getting up to straighten the mess I made in the closet this morning looking for a pair of jeans that fit...that is, a smaller pair :-). Ammi 'woke me up' around 8:45ish. I rested a wee bit longer than I meant to. It's just after 10:30 and I've eaten dinner- leftover pizza- and kettle (pop)corn. Oh, and coke from a can. I have my MRI tomorrow morning at 9:45; I have to be there at 9:15. It's at Lewis Gale so I have to leave by 8:30. Guess I'd better go ni-nite soon. Alli's got a FB page a few days ago. A day or two before she left for St Louis with Mom. They will be gone for another couple weeks. She already has been gone 3 days. I just counted on my fingers, and yes, it's only been 3 days. It seems like way longer. I was just IMing with Alli's on FB and totally forgot what I was going to say. Oh well. That's my brain. Fart fart fart...my my brain that is. Ya know...brain fart. Haha, I crack myself up. Either because I'm wacko or because I'm actually funny. I think it surely must be the latter. I think I can totally tell I'm bipolar sometimes. The tone of this entry has a different tone than most of my others. Oh well.

Is My Initiation Over Yet?

So it seems slowly but surely my MS symptoms are becoming increasingly noticeable and frequent. People say that they hurt, but I didn't understand. (Mom has always talked about being sore, and like a jackass, I figured it was weight related, and kind of to-bad-so-sad. Now I get it. When I'm at work I'm ok, as far as pain goes, but when I stand up to walk I ache. Like I have done some really strenuous stuff- like unloading a moving van or climbing a mountain. And when I walk upstairs to get home I have to sit down as soon as I come in because I'm sore. At first it sort of felt like my legs were experiencing muscle fatigue, like I had run a marathon. They were kind of 'jelly-like.' my hands have been shaking, more noticeably in the mornings. It can be difficult to log into all my stuff on the computer at work because my hands don't want to go where I tell them to. But on a good note, Dr Harpold increased my dosage of Amantadine, so I can take some when I'm feeling stressed or like I'm getting ready to have tremors. Dr Deverter also gave me a relaxant as well for the me for the same thing. I've been not exhausted exactly, but having no desire to move when I get home. Not like I need to sleep, but I don't want to get out of bed. And last time I saw Dr Harpold and told him about the way things have been going he just said it is stuff that happens with MS. I get that. I can see someone out in public who has some sort of disability and it's not a huge deal. I mean, it's just life, right? Well I am a hypochondriac and I didn't do well as a pregnant person and that ended. Now my body is increasingly deciding to do it's own thing and not what I want it to do. And I don't like it.

Hello 8th grade

Alli's 7th gr awards... Band Stage Band A/B Honor Roll Student Council Leadership Highest Class Average: English U.S. History A/B Honor Roll in: English 7th grade Citizen Award

Passing Grade

Is it just me, or are kids getting too much recognition for everyday tasks? Like going to school. I am certainly proud of my children's accomplishments, but did Allison really need a TrOpY for being in band? I can sorta-kinda understand one the for stage band, because it's an extracurricular activity. But a trophy for completing a required course?! And why does a student deserve a "band trip" (ie, an overnight fun trip that we have to pay well over $200 for) as a reward for just being a student? At school. Where they go to learn and study a vast array of subjects. I work pretty hard, at work, where they pay me. So is my monetary compensation = a mini-vacation a middle-schooler gets for going to school? Somehow I feel I'm being jipped here. I have to spend my "reward" on rent and food and gas and food for hungry mouths. Now, Allison DID accomplish quite a bit this year. Three of her classes she had the highest grade. That's pretty cool. With Amber, our previous expectations for her were B's and C's. But this year, she as obviously matured quite a bit in her learning and study habits, and has proven that she is capable of A's and B's. Of course, the grade can is determined by capability and not just the letter. Ok, the suds from my soapbox is causing too many bubbles, and they taste bad. Can't you go blind from soap poisoning? Bedtime. Go Kings!!!!!! (it's the first game of the Stanley Cup- Kings vs Devils)

Yawn

I'm tired.

Mother's Day

Sunday, May 13, 2012 Last nite was super stupendous! Robert and I cuddled and actually fell asleep...fot more than 6 hrs. I had a little blanket over myself, and the girls covered up Robert and turned off the tv and lights for us. Then they went out to the living room and watched tv until they fell asleep out there. :p. Thur nite Dr Harpold gave me a Rx for additional Amantadine and said that I can take it in the afternoon if I start to get stressed/tired, as these are the times that I have problems with tremors. I'm still aggrivated about the fact that I wrote so much the other night and then just lost it...I feel like. Just can't concentrate enough to write anything now :|

Overwhelmed

Oh, and today Obama said he believes in gay marriage rights. I don't agree with 'gay rights'. And last time I checked, the only living beings labels as 'gay' are of the human species. And I do believe in human rights and equality.

Waaaaaah...my head hurts

This morning I had to go to a Carilion clinic downtown to give a blood/urine sample. And I couldn't eat for 12 hrs. :( I'm really hungry, but I'm waiting to eat b/c I want Pizza Hut. I already ordered it online and I go pick it up at 11am. My head was hurting last nite, and when I woke up it felt like I was laying in a rock. My head didn't hurt much when I wasn't laying down. Right now my neck hurts so I need to take a muscle relaxer- I took some aspirin on the way to the clinic. Yesterday in Sunday School my leg was shaking non-stop throughout the entire class, like the shaking you do when you're nervous. And a bit afterwards my hand was shaking. I had to let my leg shake or else my head would start doing the funny/strange looking twitchy tremor thing. I don't do the same kind of tremors at home as I do in public. I think it may be b/c there is less stress at home, plus my position- standing, sitting in an uncomfortable chair...- is much more relaxed at home.

Shake, Rattle, and...Cry?

Today at work I started 'shaking' or involuntarily 'swaying.' my hands kept shaking around or tapping upand down, and if I tried to keep still my head would start 'bobbing' around. I cme home because I just couldn't stop. One of my friends walked me to the car and I sat for a while before driving. My head was still 'bobbing' for a bit, but I was almost fine when I got home. Taking really small unsteady steps, but not so unsteady and shaking so bad. I took Alli's and Lyndsey to get Alli's glasses fixed and to get some dress shoes, mostly for her band concert Mon, but also in general because she doesn't have any. Maybe her feet should stop growing ;-). Ammi is going to bed so I'm gonna be gettin ready myself. Nighty-night.

:~|

It is really frustrating when you want to talk about something but the topic is 'off limits.' Maybe it's a bad memory, or a misunderstanding or refusal-to-listen-yet-quick-to-judge attitude, or an I'm-over-it-so-you-should-be-too attitude.I'm glad that I can count on Robert to take care of me and make me smile when I don't feel like it.

Monday

Holy cow. Today as mostly good. Robert stayed up to take Alli's to stage band this morning so I could sleep in. It was aWeSoMe. Then he slept on the couch, which was actually good because I got to sleep until I was ready to wake up. Then I finished my book- Sarah Colonna's book 'Life as I Blow It.' I aonline I felt like it, and in bed of course. Me and Robert went to the office to sign the lease paperwork; we are on a bi-monthly lease since we don't know when we will be moving. Or where. That is a whole other story, and I don't have the time or energy or focus. I started feeling really bad, tired , hungry. I didn't have energy to move, and watching Amber spin around, slowly, on the office chair was bothering me. Irritating, not quite nauseating... We were watching tv in my room, I was in bed. Robert stopped by Frank's to get pizza for dinner. Yum. I felt better after I ate. And of course, he brought me pizza in bed, with pepper flakes and a coke. And came back to check on me 2-3 times to see if I needed anything. Sweet sweet man!

Oh geez...Duh

I sit here wondering why I feel so tired, kinda almost sick. Well, I see now that it is because it is 12:19 AM. I'm usually dead to the world at this time, and would have been for AT LEAST 2 hrs. I think I'm going to the first service tomorrow and skipping SS. Alli's and Lindsey want to go to SS but not church, so I'll pick them up after church and they will walk home. Maybe if I get up early and come home early I'll be able to take a nap tomorrow afternoon. I won't hold my breath...

Feelin' Fine

Home now. Got Quiznos for dinner and I had a very tasty sandwich, which of was meat-free :) Mom picked up Alli's from track so they could go look for patterns for the dress Mom is going to make Alli's for her next band concert. Today was much better at work, as far as AHT. The first 3 days of this week were HORiBlE! It was at, like, 87% or something . But today I was well over 100% so it will be nice to Go down in a HUGE blaze of humility! Watching Ghost Whisperer with Ammi. I feel pretty good, not too tired. I feel 'normal' Like 'normal'. People feel. Or at least like I did in the past.

Do I HaVe to go to work?!

I'm here at work a teeny early...I meant to do this last night but I was really tired. I went to the clinic to renew my Rx for BP and headaches, and I was supposed to give them my paperwork from work so I can get a comfy chair and to be sure I won't have to work at night. (the chair for now and the night shift in case I need it for the future.
Work is not going so good this week. My AHT is HoRrIbLe. I think it is b/c we now have to do DD steps as well and I don't really know what I am doing in a lot of cases. It sucks b/c I had been doing so well in all my metrics for the past 12wks (which is what my performance is based on, as it would apply for any type of seniority in shif bids, raises...Hope it gets better.

Busy Day

I went to Alli's Track meet tonite after work. All but 3 of us on my team got off at 12:30 but I couldn't leave that early so I was hoping they'd offer lepc later so I could still get off early enough to get to the meet on time and maybe even stop by Wal-mart first. No such luck, so I missed her first run, and the 2nd was the one I had seen before, the mile. I missed the short ones both times, and those are what she is best at. :| Went to Country Cookin afterwards with Alli's, courtesy of Mom and Dad. It was nice just the 4 of us. And I got KK this morning...it was all good today, and too much. It won't kill me to do iy every once in a while. Everybody likes to feel stuffed sometimes, right? Well, maybe not... We got home late and I had to fill out And prepare the paperwork for my Copaxone assistance and special chair request at work so I can take the, the clinic with me tomorrow. I have to get sme of my meds re-prescribed and pick up a refill. I'm supposed to be seeing the neurologist at the beginning of May. And in June I have to recertify be ause I was almost over the income limit in March. But that was because of my awesome sales bonuses. I haven't made near that, especially since my Starz sales were being tripled at the time. It's 10:15and I need to snooze. I'll have to shower in the morning...it's nice to have my I-Pad because I can write on my blog in the dark and put it away so much easier than my computer, or should I sYmy NetBoot.

Zzzzzzzzz

I found out at work the other day that the way we get our sales bonuses is being restructured, and my extra pay is going to be reduced by probably 80, if not 90%...no joke. It's true that this was a fairly new incentive that we were getting, but it started around the same time we stopped getting rent $ from Robert's GI bill. And the amount of my bonuses equalled about the same as his rent $, which was within a couple dollars of our actual rent. Don't know how this is going to work...
It's 7:31 and I'm getting things ready for bed. I need some zzzzzz's so I can preform well at work and not have to take so many breaks- b/c I don't get pd for those even though the time off the phone is approved as part of my fmla.
Sat I stayed home from work, and in bed most of the day. Just needed more rest.
We had to change our phone # on Saturday b/c we've bee getting phone calls from some loan consoling place wanting to speak to Robert E Harding. It didn't matter how many times we said Robert is Robert M Harding and asked them not to call they still did. (I googled the # and found out is was a BofA # which concerned me b/c our accts are w/ BofA. Got that straightened out thankfully.
Allison is going to Fusion camp w/ church youth this summer and is selling spaghetti tickets to raise $. In SS 3
2 people wanted about 6-8 tickets, and Terri just donated $ for it...but to Jarromy, not Allison. Granted, they knew, from last year probably, that he was selling them but it upset me. I was excited that to have a new Avon lady in Patricia since Hazel passed away on 4/14, but I won't buy from her now b/c she ordered 4-6+ tickets dorm Jarromy, and since she isn't helping Allison I'm not going to help her. This is ENTIRELY selfish and petty and just plain wrong...but it's how I'm feeling right now. :(
7:45 now, so I really do need to sign off...

MyMS

Today is fine. What is really bothering me is my back. I messed it up last week, but I thought is was better now. But nope, the knot is back it makes me walk funny. Bummer.
This morning we dropped off the van at Fleets b/c the transmission has really acting up. Robert told them it's been doing it for a couple weeks, but it's actually been since it was fixed last fall. It only used to happen on the interstate when I got to 65-70mph, but now it does it all the time, around town too. Robert didn't believe me until it started happening, around town, for him too. He said it's b/c I think I hear/feel things that aren't there. Like a hypochondriac, except w/ motor vehicles. That wouldn't be such a stretch since I am a bit of a 'regular' hypochondriac. That's probably the main reason I don't like being pregnant.
Been resting most of the day. The girls were out of school today, but I have still had restful day. Ahhh.

Diamonds are a Girls Best Friend

I'm watching the movie Marilyn, about Marilyn Monroe. I, like many others, have always been intrigued by her. I knew about her drug and alcohol abuse, marriages and affairs, but not so much about her insecurities. They obviously ran very deep and she needed constant reassurances that she was good enough in all areas of her  personal and especially business life. In 'regular' life it's difficult enough to feel unworthy of your life. Who wants all of their insecurities and failures broadcast around the world? We only want others to see only the best of who we are.  It would have known much more about Norma Jean.