MS exacerbation friendship

Sometimes you just have to be there even in the worst moments my friend has had a relapse she was my mentor and now im learning to be hers wow what a reverse in rolls. Life happens and we keep rollin. Keep doin what you CAN DO ALL!!
I look a lil crazy we been at the hospital 4 hours for her rituxan treatment. Hoping to get her back on her feet and walking again soon or at least able to get out and about. We got the MS walk coming up in April

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.

Life

I have been really tired lately so I haven't blogged much. My back still burns alot the norco helps but makes me even more tired but I can't sleep. I have enjoyed reading blog updates from my fellow bloggers lets me know im not alone. My vitamin D level was drawn again I am back on 50,000 IU of vit D orally. I will take that for 12 weeks then recheck my blood. Not much to write about not much going on my way. Guess thats a good thing

Fatigue, Burning

So fatigued today, my back has been on fire since last night it feels like I'm sitting in the car with the butt warmer on ugh painful.

Trigeminal Neuralgia - Conditions - For Patients - Neurosurgery - University of Rochester Medical Center

Trigeminal Neuralgia - Conditions - For Patients - Neurosurgery - University of Rochester Medical Center

today got a pain in my left index finger I thought o ok guess just something else goin on then looked online and found this information. Wow if you have TN it is common to have pain in your left index finger. Ugh I knew I had TN because docs already diagnosed that but this added to that if freakin very painful.

Flying away

In the air goin to see my first born :)

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.

Good Days

Been having some really good days sometimes only 3 out of 12+ symptoms show up. Then there are the bad days. The migraines I have lived with the past 22 years have returned I'm taking my meds for then making them a lil easier to deal with. I recently went through 3 weeks of dizziness doc said it was my MS my left eye had some pressure so I'm assuming it was the ON acting up again because when one eye is a lil off it throws my head into a tailspin. The TN has gotten worse I see my neuro next month and I have my list of questions for her I am not taking the norco every 4 hours for the pain along with the baclofen, 3,000mg Gabapentin and the Depkote all this makes things a lil better but playing a game of pinball with my 10 year old seems to keep my mind off things. I'm very excited because tomorrow I will be going to the live taping of The Talk of which Jack Osbourne will b a guest he has newly been diagnosed hope to be able to share my story with he and the other staff members

Tired

Been lil more tired lately. And the leg n hand cramps have gotten worse. Just been hanging low tryin to learn to find joy in this new life.

My Walk The A-Team rocked Inland Empire Walk MS

My MS Walk pics

:) I did it cooling vest and all the walk was 3 miles I walked 1/2 mile but my team did the rest of the work :) so proud of them and haha proud of me.

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

Crazy MS

so glad that's over it was a long 5 days of blah I sure hope MS lays low for ever cuz that was tiring. My family is glad to have me back , I'm glad MS went back to sleep I did not want roids did not want the weight gain again.

Waiting for docs response

Lots of tears this week. Think I'm going through a relapse my neck has been hurting more than usual the past few days , my hands keep going numb,Sharp pains in my neck,chest hugs r tighter,face pain has gotten stronger hurts to have hair down some days, gotta lay flat on my back for more pain relief,walking drunk last 2 days , just get so tired ap quick and well insomnia has me held captive. I called my doctor after 5 days of all this now waiting for her to get back to me if no answer by the weekend may go to urgent care. Gonna head to the zoo with the little one he will push me in my wheelchair I will walk as much as I can.  Hope everyone in the cyber world is well.

Fatigue

I have been ap busy with Facebook and Twitter hadn't made time for the blog my hands have not been 100% or even 80% that may be why I blog less. Just been real tired and fatigued my hands have been having slight tremors again real moody this mess has me on a roller coaster again

Pain in the neck

One symptom I have is severe neck pain and yesterday it had me flat on my back I have been only getting a few hours sleep the past few days because I have been in so much pain the Norco every 4 hours is not helping. I really wish a CURE would be found tomorrow. I miss sleep , I miss my old body.

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

Up Up and away

My chest hug got me last night I mean I have it everyday but yesterday was like I wasn't on any preventative meds for it I could hardly talk,breathing was labored. Man do I hate MS. Dealt a bad hand but STILL I MOVE

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.