2/27/14 - My Baby girl(s)

I had the opportunity to spend the day with my daughter and granddaughter today.   It isn't often that I have them both.  Kristin had a sick day because her blood pressure was high.  I don't know that I helped her in any way by being there.  She rocked Cali to sleep.  It was sweet to see them both asleep in the chair.
It won't be many more days that she can do this.  New baby is due in August.  I told her to soak up all these times.  It really doesn't feel like that long ago that I was rocking Kristin like this.

2/26/14 - Devil fingers

Good afternoon friends and family.  Even with my tremor meds I'm shaking and kicking and I don't like it.  My devil finger has unsubscribed from something MS related...cool.  I have a Carey's Camp Committee meeting tonight.  This will be the first time my friends will see me jerking and snatching. It would take really close friends to put up with me.  I think they are.  Anyway...

I took a nap this morning and it was snowing and there was snow on the ground, I woke up and it wasn't and the snow was gone.  That stinks.  I really don't have much to talk about, I should let my devil finger talk...ok, here goes.

If your happy and you know it ckap your hands. ckalp ckap, if your happy and you know it ckalp your hands, ahop cyop, if your happy and you knaow it theyn your life will realely show it if your happy and you knowit ckapy oyr hands clap clap!

See, devil finger.

Please pray for my devil fingers and my kicking legs.

 

2/24/14 - A day to remember

When I think back to today I'll probably not really remember it but it has been one awesome day.  I have been talking to a friend of mine all day about me questioning God about many things especially my MS.  I have a lot of Whys?  But I really found out that the questions should have been turned around to me with a lot of whys?  That's where I have become the failure in this relationship between me and God, not the other way around.  So I have a few things to do to make it right again.  One major thing is to get back into His word and then the rest will fall back into place.  Thank you friend. ;)

I got some good new from the neurologist this afternoon.  He called in a prescription to settle the tremors down.  Thank God, that stuff was driving me crazy.  It was hard to type or do anything with my hands for fingers.  It hasn't gone away but it sure has calmed down a lot.

I'm asking my praying friends and family to ramp it up.  I've been seeing things that aren't there and that really scares me.  I see a neurologist that specializes in MS the middle of next month.  I always knew I was a little crazy.
 
David cooked chicken on the grill today MMMMmmmmmmm is all I can say.  I just finished off my extra piece and it was still good cold.

Hey....better days are coming.
 

2/23/14 - Be One Creations

I finally finished this one.  Midway through I started the MS tremors, DISLIKE!
Photo: Ok, I took 1 like as agreeing with me so here is the first one I'm just posting here and not on etsy. It is an 8 1/2" x 11 with no space for a mat. The color of the paper is pale yellow. I didn't start the tremors until about halfway through. Starting bid is $10.00. Go for it.


David and I have had a quiet day today.  We went to McD's for lunch and it was NOT quiet, but there was a lot of activity.  I like watching people so we sit where we can.

I did our laundry today.  Not bad either, I can sit down and fold clothes.  I'm tired by the end of the day but at least I've done something for us...plus, I love the smell of bleach.

I have a friend in Iceland, Kristinn Eysteinsson, he found me on Facebook.  I'm so glad we can keep in touch again.  I went there once for several days and oh my goodness, the part of the country I saw was beautiful.

The Be One Creations part...
After a very bad flare I had an inspiration...to be an inspiration, that's where the Be One came from. I figure there are thousands of people out there fighting the same fight I am.

Be One means you can be one, an inspiration, a muse, an encourager, a friend, a supporter and at times a lifeline.

I have been doodling to do something with my hands as I can't sit still. Mind you, I don't have the energy to get up and do things I want/need to do.

So on every piece I do there is a Bee with the B1 next to it.  Sometimes you have to search for it, sometimes you don't.  Also in every picture there is my granddaughter's Cali's name.  Now that is a little harder to find.  A friend of mine's granddaughter uses my pictures as almost a treasure hunt to find Cali's name.  I am so excited to say come August I will be putting another name on my pictures as Cali will become a big sister.  She told me that I will always be her GiGi.  I'm happy about that.

Well, my eyes are sleepy, yeah, I know it's only 4:38pm.

Better days are coming.

2/20/14 - I don't know what to say

I will preface this by saying I strongly dislike commercials. 

That Osborne chick, the one that colors her hair with the unknown color that only she knows the name, she's talking to a robin...the bird...about dieting...REALLY!!!  I really can't believe that. It makes me want to run right out and buy the Atkins diet.

Abe Lincoln and George Washington were just rocking out. I missed what company it was for.

A 3 or 4 year old boy "Mommy I made poo-poo" pointing to the bathtub.

Enough with the commercials, after a while you just have to ignore them.  I did some work on Carey's Camp stuff today.  I nailed down a couple singing groups even though my tremors bother my typing, especially with my left hand. 

I got my medic alert bracelet about a week ago.  It's not what you would normally see.  It says "I'm not drunk, I have MS".  I don't even remember how I found the artist on Etsy
I asked her to make it with what I wanted and she didn't hesitate and now she has been selling these to other customers.
MS Awareness Cuff,I'm not Drunk, I have MS, personalized cuff, hand stamped, Medical ID symbol, hand stamped dragonfly,hand stamped ribbon Thank you Sherri for my bracelet!

Have you seen 1 Spark?     I think this is awesome.  Even if it's a small act of kindness.  Check out the website and like them on fb.

I've been all over the place on this post.  Most days that's how my brain is except about halfway through a thought I think another thought and about halfway through that thought I think another thought...ad nauseum.

Better days are coming.

2/19/2014 - 35 years ago today



2/19/1979 in at least Sussex County Delaware we were socked in by a blizzard.  They weren't named then.  They were just called "the blizzard of '79" and if you were here, you remembered.  I hadn't remembered the date until a friend had posted on fb (h/t to Bruce VonGoerres).  That's when the memories come back.  Now those of you that aren't locals will probably scoff at our memories.

At that time I was snowed in at home, when I say home I mean my parents home.
My Mom was snowed in at Stockley Center where she worked. 
Dad had been plowing places out with the tractor until he got stuck at the end of our road.  The snow was hip deep for him and he was around 5'7".  He had to walk about a ¼ city block.  Eh, not too hard for a 61 year old man that had been a farmer all his life, right?  Except that my Daddy had a stiff leg.  His left leg had been fused from a farm accident (yet another story for another day).
Daddy's girl
I don't remember what drew me to the window but I finally saw him when he was halfway home.  He was throwing that stiff leg up and over the snow over and over again.  I sobbed.  I couldn't stop watching.  I couldn't reciprocate helping the man that I knew would lay down his life for me.  I got two glasses filled with ice, one for water and one for tea, ready for him when he got in the house.  When he finally got in he was gray.  He was sweating profusely and I was scared to death because there was no way in or out.  He finally got his breathing and heartbeat back to normal and his skin color came back to normal. I asked him if it was hard and he didn't want to talk about it, like most things in his life.

While I'm talking about my Daddy, he was a wonderful father who is truly missed.  I wish he could have stayed around a few more years but not in the pain he was in.  I know he is in a better place.
*New MS thing last night...I woke up choking, scared the crap out of David and I.  I think I went right back to sleep after getting a drink of water.  David couldn't get back to sleep for a while.  I told him this morning that we would have to fix him up with a bed in another room, he said NO. Fine by me.

2/18/14 - Aunt D, Uncle Sam & Tremors

I have a date with my Uncle today, at least I have a date with H&R Block today...Oy!.  I'm hoping and praying I don't owe my Uncle anything, I think I've paid him enough.

On Mondays my Aunt D (Dolores) holds a Bible study.  She normally has it at her house in Georgetown.  Yesterday they held it at Mom's house behind me.  Yesterday I woke up around 6:30 and had taken my meds and had MS tremors really bad.  I had taken a nap from around 9 until 10:30.  My phone was right by my head and had rung twice and I hadn't heard my Mom's calls.  She had left a message that they wanted me to come over but would be done around 11.  I called around 10:40 and Mom said come over. Let me tell you a little something before I finish my story.  Starting 1985 through 1994 about every other year I had to have a lump removed from my right breast, that is until my Aunt D prayed for me and God healed me.  Thank God they all had been benign but they stopped when Aunt D laid her hand on my breast and prayed. Ok, back to yesterday, the Bible study ladies were Aunt D, Mom, Eva and Bernice.  I sat down, Bernice put a cross of oil on my forehead and they all put their hands on me and I felt my Mothers hands on my head and my Aunt D prayed for my healing.  I believe in healing.  I know they continue to pray, I hope you will also pray.  I pray they find the reason for MS, once they find the cause then they can get rid of this crap.

It took me so long to type that paragraph because of the tremors.  They have made me type many more characters than I really need.

Uncle Sam wasn't that bad to me this year, he gave me a few dollars back.  The state of Delaware can kiss my hiney though.  It seems every year my state taxes go up.  I have to pay twice as much as I did last year.

My husband cooked a roast beef today and we are using it to just pick on.  He just made me a roast beef sandwich with lettuce and mayonnaise.  Oh my, it was so good.  Now I need a nap.  He is becoming a really good cook.  I tell him what to do and he does it and it turns out great.  Sometimes I get out there and cook and sit while I'm doing it, sometimes I don't need to sit.  A friend used to tell me...

Better days are coming.

2/16/14 - Washing dishes

With MS my ability to do things and the energy to do things have been going downhill.  I'm exhausted all of the time.  I can't stay in bed because then my bones hurt.  So the only chore I do in the house is the laundry, and I push myself to do that. BUT...today, yes today I did the dishes.  I had been having a good morning so far and David hasn't been feeling well so some of the dishes had built up.  I had gotten about halfway done when he walked in and said he'd finish them, I said I was ok and it had been for the most part.  I got the tremors but I wanted to finish and there were 2 more pieces to the end and he said he would do them and my crybaby came out and said I wanted to finish and he said go ahead and I DID!!  Woohoo!!  I finished!!  You may think this is a small victory, walk in my shoes a day. 



And a great FYI, if you have someone with a hidden, chronic illness, please don't tell them "But you look so good!", that is unless you want them to spit in your eye.  Ok, off MS rant for the day.

When all this pain started I had to find an outlet because my doctor couldn't find anything to ease the pain.  I went back to an old friend.  As far back as I can remember I doodled.  When I should have been taking notes in school, I doodled.  When I should have been paying attention to a caller on the phone, I doodled.  While attending Supervisors meetings, I doodled.  While attending training classes, I doodled.  Well you get the idea.  I started doodling never knowing that it was becoming a new craft faze.  I don't call what I do the same thing as what they do as mine is still doodling.  I have an Etsy shop where I have a few things for sale and have sold a few things. This shop was called Be One Creations, I'll tell you about that another day as these tremors has wore me out.  Anyway here is what I'm working on right now.
Remember, better days are coming.

2/15/2014 - Cali

Today I had the pleasure of babysitting my beautiful granddaughter Cali.  She will be 4 years old in a mere 3 weeks.  This child is smarter than I could have ever imagined.  When she was an infant her Mama, Kristin, and I were calling me "Granny" to her.  When she got older she used "GiGi", which I liked much better than Granny, so GiGi it is.  Kristin picked me up at the house because my hands have been numb for a couple days (I hate MS).  I could hear her in the car GIGI...GIGI!  Being a grandparent is so much different than being a parent.  So to say that little voice screaming my name was music to my ears, you grandparents will understand.  Her Mama was getting her hair cut so when Cali and I were alone she started orchestrating what we were going to do.  We played family for a while in which I'm always the Daddy, she's the Mommy and we have a doll baby for our baby.  We eat out a lot as a family so she must not cook. After playing we ate lunch and she went into her room and took a long nap.  Her Mama came home and we had a nice visit.  Richard and Kristin are having another baby in August so I'll be a GiGi again!  I'm excited!!  I'm blessed.

We are making a scrapbook.  This is what I got from her today to add to it.  Kristin says she is drawing stick figures too.  She's a smarty.

I have a lot of pet peeve's and I'm sure I'm no different than you are.  If you have a few either comment below or send me an email and I may mention them.

Ok, here is my newest one...there is a commercial with a mariachi band and closer to the end they have a close-up of a dude with a trumpet obviously not playing it.  Come on people, do you think we are that dumb that we can't tell that the dude isn't playing that trumpet??!!

I watch Ghost Adventures and the lead investigator is Zak Bagans.  Dude pronounces Ouija as in Ouija board with a long "O" in the beginning.  I think if you are going to use a tool you would know how to pronounce it before the show begins.

2/13/2014

I had so many ideas of things to write today but I've had such a bad afternoon that I just can't.  If you read this, please pray for me.

2/12/2014 - Old friends

I'm not a good friend.  I tell this to most of my friends because I'm not very good at keeping in contact with them. With that said my friend Sharon called me tonight. It was wonderful to hear from her.  It has probably been oh at least a year that we've talked. She is cancer free!! Praise God! She says prayer heals, honey I believe that. I don't really pray for myself, not sure about that.  I do pray for those in need.  Maybe I'll turn a few my way.

I've been a big old crybaby today.  I've hurt very bad, my emotions are on a roller coaster and I've just felt like crying ok!!?? I had gotten a bill from the Dr. in the ER at Milford that I went to last month because my head was splitting.  Well this Dr. was told I had MS and what my GP had diagnosed my headache as occipital neuralgia. He gave me Benadryl.  Yeah really.  So this bill was originally for over  $900.  My insurance paid for over $200 of it leaving me a bill of $719.  I did pay my co-pay at the ER but that wasn't enough. So I called the company this morning and cried and the lady told me to look at my insurance papers and they said I didn't have to pay and I cried again and then I think I cried for just the heck of it.  Oh, I cried when I talked to Sharon too.  My Mom used to say "The more you cry the less you pee".  Fine by me!!

We are getting a winter storm named Pax.  My prediction for snow accumulations is 0-12 inches. If it gets higher than a foot I will re-adjust then.

I have a craving for cucumbers.  Am I getting my daughters cravings? I texted her she said "Nope, just Auntie Ann's pretzels".  Now I want them AND cucumbers.

I guess today has been a big old MS day with the crying but a great crying day talking to an old friend.

2/11/14 - Westminster Kennel Club re-run

I was watching the dogs, which I thoroughly enjoy until BAM!! This thing came on!!
Dandie Dinsmont Terrier
Poor thing, it was this only one entered...the only one entered in the whole country...THE WHOLE COUNTRY!!  Well if this is the only one pretty enough for WKC what do the rest look like?  Shame, shame I say.

Anyway, my day you ask?  Lazy as usual.  I did take a nap today that's why I'm typing this so late because I figure I won't sleep for a while. I did take my nighttime meds but they haven't Zzzzzzzzzzzzzzz...j/k.

So I posted a picture yesterday, of me a few years ago, before the MS really kicked, on top of Clingmans Dome. The only other time I had climbed up there was when I was 12 or so and camping with my parents and cousins.  At that time it was summer and at that high elevation, over 6000 ft, it was misty and cloudy and going up was very slippery and I had worn sandals that were slippery anyway and I was a big old crybaby and blah, blah, blah.  So when I went to NC this time alone I knew I had to climb it just to prove I could and I did. So this flatlander of elevation 3 ft above sea level started climbing it wasn't that easy...plus the way was snow covered...oh, that was the parking lot ahem.  And then I finally got to the actual climb up to climb up to (no I'm not double typing today), you have to climb like a half mile up before you get to the climb up the dome.  Serious!  So the climb up was hard but thank God they had benches along the way where I could drag myself to to *pant* *pant* catch *pant* *pant* my *pant* *pant* breath.  I had these heavy boots on and, ok, I'm still a big old crybaby sometimes but this wasn't it.  After I thought I caught my breath enough on the first bench I walked over to this cool tree with red berries I've never seen.  The tree was barren of leaves, only the berries were left.  A young lady of oh let me say around 80 came almost jogging up the path (I hate her) and laid her hand on my back as I was still bent over heaving for air and told me that was a Mountain Ash and only grows above 5000 ft.  Then I told her where I live and that I was determined to make this climb.  She says she does it a couple times a week (still hate her).  It is so hard climbing up there when there is no oxygen to breathe.  But I made it to the top of the mountain and then on to the dome.  It was ice covered.  Yeah, great.  I'm here with these heavy boots...I'm sweating like I've run a marathon...blah, blah, blah.  I grab on to the metal hand rail and up I go 2-step-slide, it's a new dance step. But there are a few spots with no ice and someone nice has put down some salt and I make it to the top and a nice couple take my picture as I take theirs. I'm above the clouds on a beautiful day.  The day couldn't have been better.  Well, maybe with some oxygen and not having to think about the way down.

2/10/14 - The reason for the blog

Yesterday when I started the blog I had a reason, I really did.  This may be too graphic for some of you, you have been warned.  MS is the damage of nerves in your brain and spinal cord and more or less specific nerves. Sometimes all of us will have damaged nerves that effect (I had to ask David about the "affect"/"effect" thing) urinating.  It takes a while (sometimes minutes) to start urinating and I will take a position on the toilet of elbows on knees, hands on face with eyes closed concentrating.  Yesterday. one of the times I was assuming the position four very concerned black ladies came to me with a lot of words of encouragement and I started to urinate, no problem, opened my eyes and they were gone.  Later in the day, I assumed the position again and two very scared white women came to me in my mind very worried without any encouragement at all, needless to say it took a while to urinate.  Sometimes I have these short movies or plays or whatever you would call them, sometimes nothing. This is the reason I wanted to start the blog is the weird crap that goes on in my mind.  Right now I am having this weird shit of my left hand wanting to double click everything which isn't cool because almost every letter it types has been doubled.  Gonna try one of my pain pills that I haven't taken and see if that will help.


Ok, I'm back, left hand still jumping but not as bad.  I've got some things marked off my "to do" list.  My brother Mike texted me this morning to throw the "to do" list away.  He checks on me every morning via text.  Love him.

When I take all the meds I'm supposed to at night I can have some vivid dreams. This morning I woke myself up laughing pretty hard because in the dream Barbara and I were laughing really hard at work.  Barbara and I worked together 22 of my 25 years.  We had so many good times.  We went through good times and bad times together and raised our kids together.  She was closer to being a sister than I think a sister would have been.  When she laughed I laughed, when she cried I cried.


2/9/14 - And so it begins...

I don't understand why it takes me so long to do things.  It seems like it took forever to create this blog just to tell you this.  Anyway...
If you don't know me I'm Dawn and for now I live in Delaware and I have Multiple Sclerosis (otherwise known as MS).  Some days I'll have a lot to say and some days I'll forget you even exist.  Don't feel bad, it's the drugs.

I was diagnosed with MS December 2013 but one of my doctor's says it may have been around since my 30's, you know, a couple years ago..BAHAHAHAHAHAAAA, I'm 55 and I ain't afraid to say it.  I'm going to my third neurologist next month, he is the only one that specializes in MS in DE.  The only problem is he is in Newark, 100 miles away.  But for me that isn't a problem as I'm sick of this crap of knowing more about it than my neuro.

Ok, enough for today because I'm exhausted from getting this started.

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