Parking Problems

Wow I had a crazy handicap spot convo with a man today. Wish u all could have been there boy did I school him after questioning me about why I was using a handicap spot. Hehe he was mad when he started talking when we were done he had a better understanding about MS and life.
Someone had rear ended him 17 years ago paralyzing him from waist down he was still mad and wondered when he would understand the reason why it all happened to him. He said people always tell him everything happens for a reason, but he says he doesn't understand that because there can't be any good reason for his accident. I told him you are alive focus on that and then go from there or u could spend your whole life mad and asking why. I said I didnt ask for this shit I would love to not have a disability and just park and run from a further spot but thats not my life anymore I have to do what I can and parking closer is better for my body especially on hot days because I may walk into the place im going to just fine but then when im done walking around in the place I may go outside and if it's too hot my legs may decide they don't want to make it all the way to the car because they are weak because now I have been overheated which in MS is called an intolerance to heat. Any way told him my whole story he felt bad. But it was a cool convo. We talked bout 30 min even compared symptoms he was suprised I also had PN like him and spasticity and that we were on baclofen and gabapentin and I said my medicine cabinet knows im disabled he laughed. His car was so nice I wanted to be a smart mouth and think like he did when he first saw me trying to get into my car (him in his car waving at me and saying that's a handicap spot you took) and say wow I guess u got a huge settlement hehe but thats not me but hey I thought it lol I got home and was mad I didnt get his info seems he needs a friend. Would be nice just to be there for him to rant we need that.

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. 

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.

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.

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

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

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.