My mommy has MS

Woke up today lil fatigued but I paced my day just right took a nap for an hour and a half then I was ready for round two the 12 year old got out of school early today those days are always the hardest for me fatigue wise but I had cleaning activities to keep him busy while I just relaxed. Hubby made dinner now off to martial arts class with the pre-teen. I feel refreshed since I have only been up and busy for 4 hours. Hope everyone's day was paced well and they were able to get done what needed to be done without too many symptoms.

Parents Day Out in spite of MS

5 Years #flipagram made with @flipagram Music: Pharrell Williams - Happy (from "DespicabWilsonle Me 2") http:lipagram.com/f/RDGJIBUq84

the pic of me in the drivers seat before hitting the road to Los Angeles to see Charlie Wilson and Keith Sweat. For a few i forgot about. MS and PN o and TN well that was until i tried a wine cooler oops forgot i cant drink alcohol anymore it woke up every nerve in my body.o well i am learning to have fun at events where everyone else is feeling a little good because they had a nice lil drink before going to a concert the funny thing is i cant dance but then i thought who cares shoot these people just dont know im glad to still be standing on my own two feet though off beat i still danced for myself and my fellow MS warriors that no http://shop.shemarmoore.com/ longer have the ability to stand, walk or let alone dance. I danced for us all. Wearing my baby girl shirt i got from shemar moore web site 

Happy Blated New Year "ROLLIN TIL THE WHEELS FALL OFF"

Jan 2014 has been better than Jan 2013
cant believe I forgot I had a blog though wow the things MS effects. Looked at my last post it was Feb 2013 wow so much has happened good , bad and good hehe
lets see well I haven't been on steroids since my last flare jan 2013
I changed neurologists
I lost my driving privilege's
I got them back
my son graduated college
I flew to Idaho for the graduation just in Dec
I had a snow day for Christmas since I was in Idaho
my youngest is now 12 going on 16

ok you are wondering what huh driving privilege's lost and got them back well long story but here it goes.
I went to see my neuro in August for some reason she must have been having a bad day she asked me
"how did you get to the appointment today?" I said, "I drove" she says, " Well i don't think with your cognitive disorder (caused by my MS) you should be driving, physically you can drive but mentally i don't believe you should" so she told me she was sending the DMV a form which a few weeks later i got a letter from them saying my privilege's are now suspended. long story short i went and had another cognitive test done which was 3 hours long in comparison to the 1 hour test originally done last July and the results were different they showed i had a mild cog disorder not severe (dementia) which the first test showed o and the tests were done by two different neuropsychologists. I took the new results to my now new doctor (because i fired the one that took my privilege away) the new doctor agreed to send DMV new forms with my new diagnosis then the DMV sent me
1) to take a written test which i could only miss 3
2) to see a hearing officer for test results
3) the results were i scored 100% on my written test
4) the hearing officer scheduled me for a behind the wheel test
5) I passed that
6) I received my license by mail and it doesn't expire until 2018

now you ask well if the doctor didn't think you should drive why did u fight it well with MS we are in a daily fight so i thought to myself I'm gonna fight this and if i am told no then its no and i will move on from there if anything it will make me stronger because i tried. Additionally i put it in Gods hands and my prayers were answered. I asked God to move a mountain and let me drive thru it and wow he did prayers answered.

my last MRI was done a few weeks ago waiting for report from neurologist my newest symptom is neck pain only on the right side and a lil numbness on that side also but the MRI was ordered because it was time for my yearly. I like my new neuro and hope to keep him. My right leg is still a little spastic but the baclofen helps some.

meds i am now on
baclofen 60mg daily
gabapentin 2,500mg daily
clonazepam
nortryptaline (sp)
copaxone injections daily
vitamin D

yes MS still is getting on all my nerves the TN and hugs seem to be more often than not. But I am here and I am still fighting. Rollin til the wheels fall off and then when and if that happens i will figure out how to keep rollin.

Life didn't promise to be wonderful but Im walking so life is FULL once again

That was me a few weeks ago during an exacerbation that effected my vision in turn effecting my walking my legs felt like jello I used my hands to grab onto things but still at times managed to run into things and fall down. I have been behind in my blogging because I was just busy with family and life outside the computer world. This was day 8 of the exacerbation by day 10 I was not walking more than 2 steps without falling, that's when my husband took me to ER and they gave me IV solumedrol they called it a mega dose (if there is one) I was only there about 5 hours then sent home to rest it took about 5 days and my eyesight and walking were 80% better I was happy with that but the 3 days after that I was 100% better ( well as for my walking and vision that is).  I am still on copaxone daily injections and this was only the 3rd relapse in a years time which for me is great so I can't complain especially since I am once again able to take care of myself and Im not wearing the big easy to put on sweats. Look out world im back.

facial pain

last two days I have awakened and have only been able to open my mouth bout 1/2 an inch lil scary since I do have TN I know it is to be expected but I just hope it's not my new normal ugh hurts real bad lasts about 30 min then im just left with my normal right side facial and ear pain. Went camping last week for 4 days 3 nights it was lil different unfortunatly it was cold so I stayed fully clothed the whole time while others swam and enjoyed the water I do pretty well with 70 degrees but 60 is a killer for me. Tomorrow me and the 10 year old are goin to visit my newly 21 year old in Boise Idaho he is there for school I text him to ask the weather and ugh I was told it will be in the 100's all week guess I will pack my cooling vest :( guess most activities will be done in the evening. Ya know with MS it's always a challange so I will make the best of it. Hope everyone had a nice 4th of July.
one of my new symptoms is spasticity around my ankles and shins ugh this is very painful still have lots of cramps in my calves and hands but not as bad as the new spasticity. Still taking baclofen for that will see neuro late july. I did get the worst chest hug while camping again this is getting scary every other day it feels like im havin a heart attack.

Hello

my walk is tomorrow and I am so fatigued, my face is killing me,my neck hurts. My only hope is that I will be able to walk the one mile this year vs being pushed in my chair. Hope all is well with all my bloggers update and pics of walk coming soon

Understanding "I want my life back"

I think MS Awareness week has brought more sadness to me than it has joy earlier in the week I was all pumped up now im just a lil confused the more awareness I try to make available to family and friends the more response of "Im praying for you" "Are you working out?" "Are you eating right" "Your not disabled go out and walk because you can yes you will get tired but do it" (im going going,going ...so much I am only home maybe 2 days a week and even then im pushing myself ugh) or they say " I saw this 80 year old woman walking the other day" um ok saying that was supposed to make me feel better well it didn't it made me feel worse because I already know someone older than me can walk further without becoming fatigued or off balance when standing too long, or legs weaken when walking or ribs tightening or the temp effecting their bodies. Huh tired Im not tired Im freakin fatigued WTH they are not getting the messege I am so so freakin tired of no one understanding it's now making me sad again and I don't like feeling like this I hate it , I hate MS, I want my life back right now.

· · 38 minutes ago

Busy Day Insomnia

Tried to go to bed early last night because I knew I was going to get beautified at the salon early morning and the dentist late afternoon. Well MS had another plan for my day woke up at 3 am with calf cramps the baclofen helps but I guess sometimes it just doesnt do it's job. So here I sit 6 am and still awake. What a long day this will be my neck is on fire my legs are cramping and my spine hurts this day has to get better as time goes on. But I do know that with my MS theres no tellin how it will go. Until my fingers hit the keyboard again have a blessed day all. Keep doin what YOU CAN!!!

On to the next chapter

Wow my life has gone 360 degrees in the counterclockwise all I can say is wow. Yesterday I had an appointment at the DMV I spent 15 min there getting my handicap license plate for the last 2 years I have had the permenant placard but I kept forgetting to put it in the window , I decided ok save yourself some energy by getting the liscense plate , so there it is well I got the plate now it's official the world will know my car runs but it is disabled LOL kinda bitter sweet moment for me but hey it's done and guess I should clap and say yeah I DID IT!!! but naw thats one thing that Im still not to happy about just like the wheelchair and walker in the trunk of my sporty SUV.

   I have been having alot of twitching in my hands not my usual tremors, pain in my ribs again and a real hot back kinda feels like someone left the heating pad on high and put it on my back, chocking in my sleep, falling asleep and waking straight up when sitting still for long periods, arm twitching.

   I decided I had enough after 5 days maybe I should see the doctor to see if anything could be done. Well I did see the doctor and as usual I got the same response "Well u know everything you described is classic MS symptoms" There is really not more than what I have done for you that I can do that will make you more comfortable there are no visual problems so no need to start you on steroids because it may not be a relapse it may just be exactly what is known about MS symptoms that come along with the package when your dealing with nerves.

I did get up the nerve to ask for a wheelchair to help with the constant fatigue he did agree and one has been ordered. The walker is good but when walking makes you fatigued it doesnt help much. I will be able to do my MS walk in style

   Now to get up the nerve to let my husband know his wife NEEDS a chair for FATIGUE (he always says well if your tired go take a nap)

    ugh trying to explain to someone that does not have MS is such a hard thing to do when it comes to invisable symptoms. I have tried having him watch the videos EVEN MY VIDEO I MADE he has not seen any of them yet. His theory is it wont change things and if you didn't know you had MS you would not be saying you have all these symptoms. Before you knew you just had a few symptoms now you have so many. I try explaining that I had 8 attacks and with each attack came the new symptoms not sure if he understood that.

I am going with the hope that one day he will meet me half way on this or we may have to think about parting ways.

I have now decided I will not go to the doctors unless it's a visit they initiated or I have visual problems to get help or my annual MRI's.

I fell asleep last night lookin at stuff to buy on Groupon when I woke up realized I almost purchased something oops time to take the card info off