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.

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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

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