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.

Symptom Video from 2011

An old video of mine I found on youtube kinda forgot about it til few weeks ago thought Id post it to the blog. The tremors were easier to see on video when I was holding something so thats why I was holding the empty plastic bottle.

http://m.youtube.com/#/watch?desktop_uri=%2Fwatch%3Fv%3D8b1jps7IyV4%26feature%3Dyoutube_gdata_player&feature=youtube_gdata_player&v=8b1jps7IyV4&gl=US

In denial

The wheelchair my doctor ordered was just delivered it was ordered to help me in times of fatigue and I still want to get out and do things.

Like the mall for Christmas shopping or the amusement park with our son without having to rent a 80.00 scooter wow that was an expensive trip to Disneyland that year.

Well any way why was I happy hubby was taking a lil nap and our lil one was at his cousins when it was delivered and he wouldn't see it?

The answer to that question I just don't have but then on the other hand I complain because my family sometimes acts as if I don't have a disability.

   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

Ahotmess With MS Awareness video

Making New Memories

Making New Memories

http://main.nationalmssociety.org/site/TR?pg=team&fr_id=18518&team_id=272792

Go A-team Inland Empire Walk MS 2012

Pens and Needles

I know Jesus had to hurt worse than I do today but wow does this hurt my spine,my face,my hands,my ribs,my back etc hurt like heck just can't be normal for one person to be in so much pain. Made a appointment for Friday to have a look to be sure this is all nerve or MS pain and to see if I need to be given something stronger for the pain OUCH. Anyhow how are u today? because well me I'm not feelin to hot.

Hugs that r not fun

Had a great day with an old friend today went to palm springs for lunch and lil gambling wow guess I did too much few hours into it all my ribs tightened my back felt hot ,legs started cramping now mind u when I left home the TN was acting up and my right leg was already spastic needless to say we came home without goin to the movies once again MS has stuck its head in where it was not wanted.

MRI AND VIT D RESULTS

since the vit D was 19 doc has ordered 50,000 IU of vit D by prescription weekly for one month. The Neuro report on this months MRI says no changes on MRI since June 2011 so no need to change therapy's again will stay on copaxone for now. Lot's of bone pain again today, hand and calf cramps the baclofen has just been increased will see if by the end of the week the cramps are better. I sure hope so. I made dinner tonight well kinda still practicing lol it was edible and not toxic today but would have been better if I remembered to make all the meal not just the meat, whoever invented the canned veggie will always be a winner in my book. Still better than yesterdays burnt vegetable's and frozen chicken fingers.

Tub experience

Wow I had taken a 5 hour nap yesterday but why did I fall asleep in the tub with the water still runnin I woke up when my hair got wet :( not a good experience lil frightening I would say wow

Remember you are not alone

I went to a great support group meeting yesterday and what a coincidence they talked about depression it was perfect for me and it reminded me that depression sometimes comes with this disease and sometimes u may need a lil help and its ok.... Before I was diagnosed with MS I was being treated for bipolar disorder for about 12 years and sometimes I kinda forget I have two illnesses and I let the one that is my personality kinda take over and that's ok but when it gets out of control I need to remember to take control of it so as of today I'm in a battle to conquer both no more skipping bipolar meds because the MS pain is too bad. Have a good day all enjoy the super bowl I will let out some stress yelling at my TV :)

MS

http://video.about.com/ms/Multiple-Sclerosis.htm

Tonight is the night

Kinda can't wait for the results of the follow up MRI. I go in the tube tonight will be taking my Ativan as to calm me down so I don't beat the mess out of the walls once I'm slid in. On our way there I felt a little nauseous and clammy never felt like this before o well Mabe it was my cooking so we trucked on to my MRI got there I was fine until they called my name then all heck broke loose. Mam can u lay back and close your eyes me "ok" shortly after me "um wait I gotta get up my nose inches " tech ok well u don't have to do this it will be long and u will be in there awhile. Me "ok well can I call u if I need u?". Tech yes sure I will let u out. Well guys I did it its over and from now on I will say yes iam claustraphobic I don't ever want to do that again blah now the wait is on for results 

Fatigue

To start off my day I got bad news my oldest did not do well at his big track meet he loves track and right now his heart is broken and there is nothing I can do to fix it. On the other hand our cousin that had bone cancer and had the cadaver bone put in her leg has been given the ok to get back on the soccer field no games but she can practice. :) MS wise Wow I was so fatigued today. I went to a birthday party yesterday I think I did too much I was the old me for a few hours. I took pictures somethin I used to do everyday it was so much fun feelin normal again and I knew I would pay for it today my body is killing me I rested all day today that helped some but now I'm walking weird well a lil drunk and my eyes feel weird so I will use tomorrow to rest again. I hope you are all staying well and rested.

A day in the life

Today was kinda nice only a few symptoms got on my nerves so for that I am thankful. On the other hand my 10 year old is spoiled rotten so Im working to unspoil him and this mess is hard Me "Clean your room" Quincy "so you want me to put up everything" Me " What part of clean do u not understand" wow being a mom is so much fun then add the fatigue of MS to that and wow what a job I have the oldest on the other hand has another track meet tomorrow please pray for him that he runs faster than his fastest time.

lab results

Vit D level went up from 17-19 but still not normal doc will let me know if she's prescribing the 50,000IU again or what's next ugh I can never get this mess to normal level and with the heat intolerance it's very hard because im inside all day.

New day new symptom

My neck has been burning for the past few weeks tonight is real bad. I took a 4 hour nap today u would think I would feel rested but no so fatigued. I have been scheduled for my MRI follow up of my brain and spine hoping the results show no progression.

follow up visit

saw the neuro today you know thay did all the normal evaluations had me walk the line, put my arms straight out in front of me went over my list of new symptoms since last visit in june, ordered my follow up MRI of the brain and spine. I have been prescribed baclofen for the cramps in my calfs and my hands I hope this helps because the cramps are messing with my sleep schedule. I ran into people I used to work with today 5 of them to be exact and wow slap in the face seeing them in their uniforms and me in plain clothes just not supposed to be how it is. But hey I have been off work over 2 years now I gotta take care of me , it still hurts seeing them and thinking of how I used to work and the fun we had together goin to lunch, christmas parties, pay bonuses.  It was a busy day I also had my mammo (ladies go out and get it done).

I have so many reasons to smile

Watch "Quincy tribute to MJ" on YouTube
My youngest gettin his groove on

Paul Robertson - Track and Field Profile

Paul Robertson - Track and Field Profile

Cramps

I have had calf cramps the last few weeks doc increased the norco to help and it has helped only one problem I now have thigh cramps so weird. I'm not letting it stop me my god sons bday party is today and me and my lil guy are goin to party. My oldest has a big track meet today I pray God gives him wings and he flies past that finish line. So far 4th place in the 400meters. He's got to run faster to earn more money next year please pray for him. Thanks

Proud

My youngest advanced in martial arts and received another A on his science test. My oldest is enjoying his Jr year in college. Hubby is takin me to dinner Friday,My body is feelin a lil better. In spite of MS I am happy.

feeling blah

the men in my life

P age 20 Q age 10

My Story to be continued

Feelin weird today

My eyes feel like they are crossed when I get up to walk I feel dizzy and nauseated last time this happened it was my optic nerve I hope it doesn't last more than 24 hours because I don't want another relapse I don't want the steroid weight gain. Saw the doc says it's nerve pain in my hands and calfs increased the dose of norco will see what happens. I feel so bad I don't want to eat and I love food cant wait to feel better.

The diagnosis

BORN TO FLY
　
Diagnosed with MS 2009 after years of symptoms
Then July 2009 right when things
Seemed like they were so perfect
My oldest had graduated high school and was set to go off to college
My youngest was enjoying an active mom
I woke up one day feeling dizzy
Then my eyes felt like someone had put Vaseline on them and it was so cloudy I could barely see what I could see was double
But being the strong me that I am I was like wow this is weird but I probably just have the flu
Then my hearing in my right ear was gone things sounded like the teacher from Charlie Brown was talking to me
It helps to have a partner, a caregiver and a friend
I still wasn’t sure so I just layed in bed all day
Next my right side of my body went numb I thought o shoot a stroke huh what no not me not now I was only 37 years old
Went to see my doctor he says well we have to do some tests.
He called my husband and I at home and says “I need you to come into the office”
We were just coming up on 20 years of marriage everything was in order the way we had planned.
So we go in and he says well it’s “MS” Multiple Sclerosis
I am Bipolar have Chronic Fatigue and MS
Having a strong support system has helped me stay strong in this fight to stay in control of MS instead of letting it control ME.
MS has taken away so much but it will not steal my JOY

My Meds

I started with betaseron the first year kept having progression so doc switched me to Copaxone then copaxone with IV steroids for 6months to end a relapse
Xanax
Gabapentin
Norco
Depakote
Tamazapam

ME Poem

ME
is it me or do u not see
Is it me or can I be imagining this
Is it me or did my life change in an instant
Is it me or did I really retire at age 40
Is it me or is it wrong for me to ask for 30 min of ur time no I'm not dying but I do feel every moment is a gift
Is it me or if I had an illness that ended in death would there be more awareness made
Is it me or is the burning ever goin away
Is it me or is there a snake wraped around my chest squeezing me til I feel I can't breath
Is it me or am I really walking on pins and needles
Is it me or does my neck really snap crackle POP like rice crispies but painful
Is it me or do I really need a handicap spot to park
Is it me or do I have to avoid heat and cold
Is it me or are there more bad days than good.
Is it me or is the ground really saying hello to me today
Is it me or am I too strong for this disease for others to realize how much I hurt
Is it me or has a CURE for MS been found yet???

Retirement

At age 40 I retired from my dream job as a medical assistant of 15 years. MS effected my cognative thinking and dexterity which interfered with my work

My symptoms

My symptoms

Eye pain
Facial pain
Leg pain
Numbness hands
Burning legs
Chest tight
Forgetful
Fatigue
Neck pain
Head pain
Migraine
No sense of touch
Temp sensitivity
Back pain
Stabbing pains
Insomnia
Feel disconnected emotionally
Uncontrollable laughing or crying
Hurts to brush teeth
Hurts to eat sometimes skip meals or eat just soft foods
Leg weakness and spasticity
Neck pain
Hands shake after fine motor repetitions
Eye tremors