Wednesday, November 11, 2009

Grandchild number 5 will be here tomorrow! Kyle Logan Graham. Im so excited but a little sad cause this one will prob, be my last! But can hold him an
d rock him now that the rest dont want to be held anymore! Wish us luck and prayers for Mommy and Baby all goes well! Love Shari!

Monday, November 9, 2009

I had a break through night! I slept 12 hrs, got up for meds only ONCE! and had 30 minutes of no movement when I woke up. I think its the extra Cymbalta is finally kicking in or I was exhausted. whatever I will take it! I hope tonight is this good! Yea me and the yea to the Drs!

Sunday, November 8, 2009

Im a a bad blogger! Ive been so busy at Drs and babysitting Ive neglected my duties. Shands was a nightmare! 7 hours of rigorous Psych. testing. Things my brain hasnt done in 40 yrs! When I left I went back to my room and shook for 5 hours. Kipp drove up from Orlando about 2 hrs away and took me out for dinner. He knew I would climb into bed and not eat! The next day was 2 hrs Psychiatric testing, not so bad, and now Im Fast Tracked . meaning the 3 Drs Neuro, Psych and Psychiatric will decide what is the best course. They specialise in Deep Brain Stimulation for Movement disorders on top of CD. By coincidence the Neurosurgeon Dr Foote was having a seminar in Orlando so we went and met him. He said he would put me on the Dec list. they only decide once a month. I am so ready I would go today! The pain is bad cause the Botox has worn off. I sleep all afternoon now.Its not so scary looking. you are awake the whole time and they talk to you. They implant a wire and then 2 wks later they implant the chargers in your chest and hook them up. If I can give birth to 2 babies with no drugs I can do this. Nov 17 is Botox day Yea! and we are having a new grandson on Nov 12th so there are still blessings in my life! wish my daughter luck, this is #3 for her! Kyle Logan Graham! Thanks for all the thoughts and prayers! I really need them, Im going to do this if I get the okay! Im too young to be this sick! I have grandbabies to see grow up! They are what keeps me going! Love Shari

Tuesday, October 6, 2009

Tomorrow is the big day! Off to Shands... maybe they will have the Magic Elixer! Wish me luck or at least a cute Doctor! Got all my records ready that he wont even look at and my nails done so Im ready. I will check in after the visit! Shaky Shari

Saturday, October 3, 2009

Had a good week! Sleeping better now that Dr has upped my Cymbalta ,I dont shake violently while Im awake. getting ready to go to Gainesville on Weds. they have a full service clinic and research hospital there. I hope its not just a meet and greet. Ive met everyone I have wanted, now get me better! They want all my records since birth..hahaha I told them all those Drs are dead! what are they thinking? So I got together what I could. Last 5 yrs, after that Dr has to go back to the storage closet! The Kipper and I went to HIS 40th reunion last night.Not Mine! It was fun. I stood the whole time, Im better standing so I lasted about 2 and a half hours. Not bad. Tonight is the big event, so we are just going to the cocktail party. I cant do a 4 hr dinner and dancing. Kipp Dance??? That will be the day. We had a blast at Terry's party at Margueritaville! We dressed her as the devil cause she is! and we went as black cats. Sara had a huge Devil cake and we passed it out to all the kids in the restaurant. There were quite a few Bdays there so we all sang together. They asked us to come back everynight cause we were the life of the party! we always are! The cutest little boy from Calgary Canada came to our table and said it was his Birthday too! Terry gave him her giant Balloon hat and we sang to him. he was 6! so precious, I doubt he will forget us! So life does go on! I only stop when I have to! Its hard to feel bad all the time but I am adjusting to it! Wish me luck in Gville, maybe they can give me more help! Have a great week, Fall is here! thats good enough for me!! Cya Shari

Friday, September 25, 2009

This was at our Fairy Princess party. Notice the tiara! Thats why its good to be Queen, and eat chocolate ganache cake! Lindsay liked this picture so she put it on for me! thats why Im the Queen, I get her to do things for me! Thanks Linz! check out my Facebook page for more silly photos of my friends! Shari Minter

Tuesday, September 22, 2009

Had a fairy birthday party last night we had a blast! We made Mo wear a Boa, a sash that said 60 fairy wings, glitter masks and a fairy hat! We all had raspberry Martini's and this fabulous Choc cake to die for! we are such dorks! Oh yes and we all wore our Tiaras! we laughed so hard that one of us tinkled, not me!!! The table next to us was having a party too so we all laughed together and gave the little girls the magic wands and masks. We held our wands together and each made a wish! What fun for old ladies! Today I had lunch with my old friend Jane, our kids grew up together and then she took me to the factory where they are building the Harry Potter set for Universal studios! cant wait for it to open! Maybe I can get a magic wand from Olivanders to cure my Dystonia! Got an appt at Shands , we will have lunh ach at the Swamp ,yummy, and make a day of it! busy day today! Moving forward. Bad day yesterday but better today. Maybe the answer is Raspberry Martini's! Im a genius! Wish good days for all the Dystonia rare disorder gang!

Saturday, September 19, 2009

Guess what? No magic pill for me! I asked the Dr for a magic shot and he said Tequila! haha No improvement so in Nov I get stronger shots. he said I dont have classic Dystonia, there's something else going on so on to Gainesville to Shands Neuro for more research. I feel like a lab rat! "I need a Psychiatrist desperately! " well Duh dont we all! Hubby went in this time, I think he gets it that this is serious but he's a problem solver so he says we are finding a cure! just keep going til we get one! Nothing like an Alpha Male to take charge, I hope he finds me one! Dr said Miami has a good ctr also so maybe we will just travel the state! Today I hafta get crafty, BFF's have
another Bday on Monday. This time its a Fairy Princess party. Mo is 60! So I have lots of stuff to spray with glitter. Then other BFF is next weekend. Her party is a surprise in case she reads this. Lets just say she's the wild and crazy one! we will go with that theme! Today is also big football game Fla - Tennessee...Go Gators! Wearing my blue as Urban Meyer has instructed! So there's more to life than Dystonia! Gotta keep moving Never never never give Up! Winston Churchill! He's my inspiration! C Y'all after the game! Maybe I have some Tequila!

Tuesday, September 15, 2009

Been busy busy with all the babies! Gotta go back to the Neuro on Friday! Yuck, But Whatever! Maybe he will have a cure by Friday. A Magic pill or shot! Thats funny that you {Keke} and my sister are both Cancers. She is 6/ is my grandson . Birthday buddies! My husband and grandson and roomie in college are all cancers! How weird < I must call them to me to keep me from floating into outer space. Im a Leo. A bit spacy and always moving on to the next thing. Ideas floating out of my head at breakneck speed but cant ever get a project done. thats where my Virgo daughter and BFF come in. I just pass the ideas onto them and it gets done! How cool is that! My kids think Im bull headed... but not me! I just always want my own way! Is that a Leo thing? Old man hubby is used to it by now. 35 yrs in Nov. He better get me something good! he always does cause I drag his butt to the store and show him what I want. Works for me! This yr I want to go to London for Christmas, I dont know how much longer I can make that 10 hr trip. Could be my last one! Boo Hoo then London will have to come to me! I truly believe I lived there in my last life. Next life Im moving back! In fact I might leave tonight, laundry is all done passport is ready!what more do I need? clean undies....Cya Shari

Friday, September 11, 2009

I finally had a normal day yesterday! I felt good enough to go to the Mall and shop! Yeah I know they have missed me! No nap needed and then out for dinner! back to reality if only for a day! Today my sister had me over for lunch, yummy chicken salad and then we went thru old pics of people we dont know but hopefully we guessed right! People... please put the names and yrs of people in photos so your relatives know who they are! some of these were 100 yrs old and from Scotland and Canada. Its hard to place all the names together! Then I took old pics of us so her girls could laugh at pics of us in the 60's! Prom etc ...the dresses made them laugh. hey they were cool at the time. 10 ft long surfboards at the beach. hahaha!really cool bathing suits, remember when your Mom made you change in the car.. all naked and sandy, how embarrassing! Memory lane, old boyfriends who are all old men now, us too I guess! Hope for another good day tomorrow. I think my depression has subsided for a while. I hope so, back to life again! Shari

Wednesday, September 9, 2009

well I finally fell asleep for the 1st time in 2 days. In the car .not driving of course, head back mouth wide open. How attractive. came home and finished my nap thru Obama's healthcare speech. something I should be paying attn to. Is any one out there who can tell me how to sleep with this horrible disease? Up all night Tired all day, then finally crash. I love to sleep its my favorite thing in the world other than reading . hot tea and chocolate! Last week I feel asleep at the computer, legs hanging down and they fell asleep. couldnt walk when I woke up. such strange things happening!I think My husband and I are taking a ride up to Gainesville to see what their Neuro dept. says. worth the trip. They want me donate my brain but only if my grandkids get in.LOL I feel like an experiment here. try this... try that! My life has come to almost a complete halt. can only drive before taking any drugs, then Im worn out by 3 and have to be home to rest my neck. this truly sucks! I look at all the healthy little old ladies in their 70-80's and am sad cause that will never be me going on old people cruises. I just want my life back. Its just been 4 months and Im ready for the surgery! Buzz my head and do it now! I have to find the right surgeon though! That will make a big difference! LOL Shaky Shari

Tuesday, September 8, 2009

well Ive had a busy weekend! Got my "Welcome to Dystonia" packet...that ranks right up there with the AARP packet...Had 2 bad days over the weekend that freaked out my daughter. Ive been trying to protect them from the bad days. I guess I cant do that any longer. I do have bad days but try to keep moving and never give up. I have 2 new movements now...on top of no no no and the big pull... I have yes yes yes and the bouncing bobble head. Oh yes and the sprinkler head at night. what a combo ! I think I am seriously getting motion sickness from this. Anybody heard of that? Had a fabulous time at the BFF party, we had the restaurant laughing with us. Terry brought a full sized Austin Powers that said ...Oh Behave.. all night
she is so funny! and tomorrow is my youngest daughters 29th Bday so we just had a family party with all the grandkids. its was chaos as it should be ! 4 under 4 and another in 2months. Christmas will be wild! I have a lot to keep going for dont I? and all my friends are praying for me so I cant give up! can I? Keep me in your prayer I need them! Shari

Thursday, September 3, 2009

Big girlfriend party tonight ! Hafta rest all afternoon to get thru but we laugh our pants off! I have a special surprise for them, we have been friends for so long. two of us for 23 yrs! Isnt that amazing in this time? Growing old together with all our trials and tribulations! women rock! Be there for each other! Weve had marriage problems ,divorces, financial problems and now me the health problem! We are stuck like glue! Maybe I will write them each a note to tell them what they mean to me, but they will all cry! plus they wont be able to read my handwriting .I hate to do it on the computer. I will have to translate, heck I cant even read my own!!! Love Peace and Laughter, what else is there???

Wednesday, September 2, 2009

Looking forward to a better day today. lotsa rest last night. still waiting for this Botox to kick in! Patience is my middle nam e! Thats a family joke! My Mom wanted to name me Patience, what a laugh that would have been as I have absolutely NONE! I am hoping Keke has a better day today too. The karma gods are on the case! Tomorrow night at the meeting of the Tiara society I will sick them on the the Evil Queen too! It will be our small contribution to eradicating evil in the world! Poisoned apples to them all!

Monday, August 31, 2009

Saw my GP today. It was good to talk to her. she listens. she gave me some psych. names and changed my prozac that wasnt working at all. I hope that helps with the sadness. and she said I need to look at this as manageable just like many other diseases. Its so good to have someone actually hear you. I know she felt bad for me but she's trying all she can to help. Sleep being the biggest problem. I know what I am saying disturbs some people but I need to say things, so if it upsets you please dont read this. I know this is hard on you too. I off to bed to try and rest my neck seems like I spend a lot of time in bed now. I hope this Botox kicks in soon this is day 6...

Sunday, August 30, 2009

I am sending this out into the universe...why are the truly mean people allowed to live? where's the karma thats supposed to happen to people who are kind to others ? I was having a great day until I was spewn poison all over me over something stupid. Now all I do is shake and pull. I cant settle down I cant handle stress and meaness ...what do I do? My entire life has been surrounded by mean people, am I pulling them to me somehow? was I horrible in my last life? I know I only get one life but this one is rapidly going downhill! why doesnt the universe take care of these people? we cant do it! but we are forced to live on the same planet in the same space as they are! whats with that? I think the truly evil ones prey on the kinder ones because they know they can. and its not in our nature to fight back all the time. I have been them fighting all my life! Trying to protect myself, but its taking its toll...everything is an argument, why is that? all I want is peace.......

Saturday, August 29, 2009

Back on my feet today! All my grandbabies are starting pre school on Monday. Its sad to see them growing so fast! I want to keep them just as they are today! perfect little ones so sweet and loving! But time moves on and I cant stop it! But we are looking forward to our new baby Kyle coming in Nov, so we will have a little one to cuddle again! A baby born in our family every year since 2005. such blessings! Who could ask for more? My cup runneth over!

Friday, August 28, 2009

Im out of bed today yeah! Im still shaky but hopefully moving forward! This sucks! but Never Never Never Give Up! Winston Churchill... it worked for him! Thanks for all the support I really appreciate it!

Thursday, August 27, 2009

worse days ever. since yesterday at 4 Ive had the worst spasms. I hope this stuff works soon!

Tuesday, August 25, 2009

Since I cant read any longer I have downloaded 3 books onto my iphone Thank God for technology! I am looking forward to listening tonight!
All went well today! Yea no pain just 7 little pricks. No not the ones in the waiting room LOL Meet the sweetest man in a wheelchair from a car accident. he was crying on the phone he didnt have the money for his shot, broke my heart so Kipp and I paid for him. We sat and talked and he helped me thru it, he helped me more than I helped him! So we were there for each other, each having what the other needed! How wonderful. Makes me realize there are al lot of poeple who need more than I do. I got to come home and sleep all day. Not many have that little luxury! Thanks to all your support Keke esp! I couldnt have gone thru this without your support! Love Shari
Well todays the big day. Im nervous. they moved my appt up tp 9:30. My family got together last night and had a nice talk about how we are going to deal with this as a familky. Taking the stress out of my life and having only positivity surround me as I go thru these treatments. I appreciated that. helped me feel less alone in this. we explained what it is without trying to scare them, my girls. They have their busy lives and I have been trying to protect them from this. They dont want to be protected, they want to know everything involved, even offering to come today for my shots. That was comforting. I know they cant do anything but listen, but thats enough for me. wish me luck! Thanks girls if you are sneaking a peek at this! Luv Mom

Sunday, August 23, 2009

Not bad today! I got stared at by some man in Target, but he was ugly so. so what! I have decided to go to some counseling at my church. maybe they can help. Ive had 2 bouts of the pity party. As my friend Terry says " there's no presents at the pity party!" so true! Dont want it to get worse...I dont know if they know how to deal with this kinda thing but maybe they can steer me in the right direction. Home alone today for the first time in a while. Cant really read or watch TV. I told my husband its like trying to read in severe turbulence! He's funny , he thinks he can hold it still for me. LOL at least he is making me laugh. Not much else he can do! Tuesday is looming fast. Amazing how time speeds up and slows down. Then I will get to the Dr and it will crawllllllll.......Im beginning to understand Michael Jacksons sleeping drug addiction. The only thing that matters is sleep! No one called me today except my daughter. Beginning to feel avoided. I feel another pity party coming on so I guess I will get busy doing something! Cya Shari

Saturday, August 22, 2009

Better today I think the answer is 10 hours sleep. Thats immoral isnt it? I was so down yesterday, all about being tired. Tuesday is Botox day getting very nervous! I hope I dont scream or anything. How undignified Maybe they have a screaming room in the back! I wonder if Kipp will come back. prob. not it would freak him out! I kinda hope they put me out, the neurosurgeon said they would. But this is the Neurologist doing it so who knows. But I am looking forward to being normal again, even for a while. Off to have my tea! Hope y'all have a good day...Me too Me Three! as my Joey says!

Friday, August 21, 2009

Today must be a sleeping day. woke up at 6:15 and still in bed. going to sleep now. Hope tomorrow is better! G'night
its 3 pm... im going to bed! If the dogs bark I will shoot them and no judge will convict me cause they are so horrible!!!! I am tired and even Dillards didnt help, well maybe a little...
Bad bad night Pushed too hard and paid for it! Fell asleep at 10 I was so tired, then the phone rings. That was it for the night. laid there til the meds kicked in, my head moving like a sprinkler head , jerking right to left. what do you do? Why do the meds take so long. It was 1 am before I fell asleep. Cant live like this for 30 years! How do people do this? Its like Chinese water torture! woke up at 4 ... took more meds wait an hour then up again at 8. Is this going to be my life forever? Im ready for the surgery bring it on! I will pay for it myself! Im only 2-3 months into this and Im going crazy! Im only allowed to go out 1 hour in the afternoon, then I have to be home? Going somewhere at night sends me into spasm land! I also have some numbness in the left side of my face this morning. anyone heard of that? Hopefully I just slept on it wrong. sorry to rant but this is getting to me. People say to stay positive. I am Im positive I hate this!!!! Hopefully I will have a better day! Shari

Thursday, August 20, 2009

Recognise the song??? I love it its from Bridget Jones Diary I

Wednesday, August 19, 2009

Its 4:45 in th afternoon. Im feeling pretty good today. Usually after babysitting Im worn out. Its all about the amount of sleep I get! Lots last night thanks to the drugs. I dont sleep at all without meds. I hate it but what else can I do? Looking forward to the Botox, like childbirth, you want to get it over with!!! Looking forward to reading again! The stillness is so important. I cant live without reading! Ive given up the one eye TV...I try not to look at all the websites except the informative ones. The rest scare me to death! My hubby yellls at me! Dont look at that stuff! This is as good as the blog gets, No fluffy stuff for me. Its all about the words! Hope y'all are having a good day too!

Tuesday, August 18, 2009

Not a bad day. sore but slept in so I got some rest. My sister came over to mess with the blog. went to the bookstore to find some info on Dystonia. wasted trip. Hand is sore from all the digging yesterday at MRI... Its weird the pulling always starts around 3pm. I wonder why. I try to get home by then. Everyday day I drive by my friends house, her husband died at 49 from cancer so that jolts me out of my pity party. I also have 3 friends with cancer. I wonder why its all the women who are sick lately? are we just living longer this generation? My BFF is dealing with her Mom 's declining health. Dont want to bring everyone down. so I whine into inter -space! Husband is doing a pretty good job at being supportive, I didnt know how that would go at all. But its early yet. I still need that cheat sheet about taking advil with all this other stuff. Dr said to exercise, that sent me into massive pull for the rest of the day. x that. then got some yoga going. same thing. today I got a meditation tape. cant hurt myself too much with that!LOL maybe I will borrow Ash's Disney sing a long tape to cheer me up! Some day my prince will come! Im still trying to find the answer to sleeping. I can only sleep with meds to stop the shaking. Does the Botox stop that? I hope so! If you have any answers to that Its my biggest problem so far! Cya! Shari

Monday, August 17, 2009

MRI no@ today. not too bad except 35 minutes of digging for veins, I have none. Finaly got one tiny one in my hand to put the catheter valium thru. Got on the table, packed me all in , locked me down still movng, more Valium...then more valium then more valium, poor kids. Let me just say Valium stings in your hands!!!!! So they improvised. Nice sweet jason hekd my head down as hard as he could til his hands gave ut then put his head down on my forehead and held me down. He said I was a lesson learned. I must be the first one they have seen,,, What a sweet kid, He says he;s an MRI nerd. finds out if he's having a boy or girl tomorrow. Mom has cancer so they went ahead to have a a baby now. Nice young people at NSI in Winter Park.came home and Fell asleep for about 1 hr. now all the meds have worn off so Im waiting for them to kick in again, Im morphing into Michael Jackson. All I can say is this has to stop... lindsay has fixed my URL HTTP://sharisramblingsadystoniadiary.blogspot.cim I tried it it worked...
Rough night last night! Couldnt sleep. did way too much. I actually asked Kipp @ 1 am if I was sleeping in my clothes. Am I confused from the meds or exhaustion? Going back for another MRI today,=. Lets get this over with! I hate those things. and I
cant get this blog thing straightened out, not that anyone is reading it. My daughter tried but couldnt do it either. so your guess is as good as mine which page you will get! Like Roulette!I just dont have the patience! Family party was insane with all my grands running around! and 1 more coming! Emily loved her Nikon and now she can be a pro in journalism! Im looking thru my right eye... hard to type that way. Making lotsa typing mistakes sorry! Im staying home in my jammies today til I have to go to WP hospital. No food after 12 anyways no where to go for lunch...just me and the washing machine, a match made in Heaven. Thats a location also Sue! So long for now! Shari

Sunday, August 16, 2009

Did too much today! Shopped all day with Linz and then family party. I am Shaky Shari tonight! I have to learn to pace myself. Im soooo tired. took some meds and off to bed. The family didnt comment but I got shakier as the night went on. I try to control it but cant. Iwould love to lie down and rest but that makes it worse! what to do???? My daughter put this picture on for me today but lost my music. Whatever! Cya tomorrow!

Saturday, August 15, 2009

Had a great day at the Mall and back to school shopping for my boys. they grow so fast! Keeping busy, best thing to keep my mind off whats coming up. Thank God I dont know whats coming. Just an appt at the Neuro. he didnt mention the EMG so I dont know if thats his plan. Hurt every afternoon, take sonme advil. I better ask cause I dont know about the interactions. Dont want to do liver damage too! I need an MD...should have a guide ...what I can take with what! cheat sheet...Like the old Cliff Notes. Interestingly enough I have found out my nephew has a mild case of Tourettes blinking etc and my niece was blinking when she was small. Their Dr said they would both outgrow it. My niece did. But they are cousins not brother -sister...similar genetic problem in the family. I dont think I will outgrow mine! LOL family party tomorrow, the first time they have all seen me since I started shaking I wonder what they will say. Hopefully I wont pull too badly. That can freak people out! My kids dont say anything when it happens, I hope they aren't creeped out by me! I think its hard for them , it being genetic. very scary for their future. Too soon to talk about it though. I did tell my daughter it was very rare. dont want her to worry for herself and her boys...Hopefully have a good noght cya