Walk MS 2014

Out Inland Empire Walk MS raised funds and awareness. So proud of our team.

Baby Girls day MS in timeout :)

Had such a good time a couple of weeks ago i met up with girlfriends that I had met in an MS chat room called MS is BS about 3 years ago from the first day we met online we just clicked. Its hard to find someone that understands exactly what your goin through when dealing with a chronic illness but wow I have found 5 people that get ME and get MS. We decided we would do a baby girl photo shoot and it was fun. The hubbies were able to meet for the first time and the kids got to know each other and even roasted marshmallows. MS=Meeting Sensational people. We have met up a few times since we first met 3 years ago but I think they would all agree this day was one of the best.
This is just an example of the photos we took
The pic of us without the baby girl shirts is a pic of the first time we met.  Haha we make MS look good. 

Fighting together

MS has taken so much but again I have found a reason to smile.

Tennitis an annoying part of my MS

Wow nice and quiet. The tennitis (pinging noise is my ears) was bout to have me screaming so glad its gone for a few. #MSAWARENESS month. Only a small percentage of people with MS have this symptom even those without MS have tennitis. So u may know what im talking about. Mine gets real loud sometimes that's when its the most annoying. At times its just ringing or high pitched buzz then it for me it may also sound like someone is bouncing a basketball or a washing machine swishing water around. Flonase helps weird that something you spray in your nose can help with a problem in your ears caused by lesions on your brain.
Info I found online pasted below

How is Tinnitus Treated?

Multiple sclerosis is just one of many conditions that could contribute to tinnitus. But the real question is how ringing in the ears can be treated to relieve this recurring discomfort. If tinnitus has resulted from MS, it is likely that healthy nerves have been destroyed to cause the symptom. In some cases, nerves in the brain may have been affected to signal the brain to hear ringing. Treating ringing in the ears related to multiple sclerosis is difficult since it is hard to detect the problem early on. Once diagnosed, there is no set treatment for the disorder; a doctor may focus on managing symptoms instead.

Is Tinnitus the Sign of a Multiple Sclerosis Relapse?

It is a possibility. If you are suddenly experiencing hearing issues, it could signal a relapse of your condition. Hearing problems triggered by MS have also been linked to heat exposure, in some cases. If you suspect that ringing in the ears is a multiple sclerosis relapse, it is important to consult your doctor right away. A relapse may indicate a new lesion on the brain or spinal cord that requires medical attention.

If your doctor isn't able to provide any answers to ringing in the ears caused by multiple sclerosis, it may be worthwhile to seek out a specialist. Some neurologists believe that tinnitus has nothing to do with MS. In this case, it may help to consult an Ears, Nose, and Throat (ENT) specialist to determine the cause of the condition. Over time, ringing in the ears is likely to resolve, but medical help can provide comfort if the issue is severe.

Life

Thinking about my life the last 5 years. I went a month no walking after a relapse in 2006 had 7 months of balance training etc I am more than grateful I can still walk unassisted for the most part. I have watched friends with MS not get the chance to walk again and have been there for them every step of the way. I also have friends with MS that I have had to read things for them because their vision never came back to normal unlike mine theirs is still more double than normal. I went to a concert recently now picture this I cant dance but I stood up and danced as much as I could I was laughed at a little but I danced because I could and knew there were so many that wished they could still clap let alone stand up and then also dance so I danced for us all as my husband laughed not realizing how important that was to me. I didnt get mad because I said to myself if ever I cant physically dance I know that day I did make him laugh.

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 

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.

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.

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

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.

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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