Rosebud\

do you ever feel like noone wants to do things with you because your to much work for them?  ex:  your hanging out with your family and plans are being made for the following day to get together with everyone, but, your in a chair, you don’t drive anymore and have no way to get there.  so you can’t go and instead of trying to help figure out a way to get you there the response is oh well maybe next time.

another example:  back in the day when you could still walk, you got invited everywhere.  now that you are in a chair nobody seems to want to hang out with you.  the days of having a social life is over and the only time anyone wants anything to do with you is when basically they have no choice its more obligation then anything else.

sorry for babbling but needed to get this off my chest and nobody close to me gets it they think i’m just going thru a phase.  maybe i am but if they would listen instead of criticize life would be better.

the thing is i already do everything by myself, to the point of, the people i associate with are shocked when they hear that i’m married and have 3 kids.  i guess what i really want is when someone says hey lets go to the movies or do u want to go shopping, they follow thru with it instead of just not showing up and then hearing later that they went to the movies or went shopping with someone else.  if they really don’t want you to go then don’t ask in the first place.

sorry again on soapbox.  thanks for listening.

the question of the day is how and why would you date after being diagnosed with ms?
ok so lets start with this fact, i’m married but considering ending that. my thing is i’m in a wheelchair. its bad enough having to tell someone that you have ms, but how do u even approach anybody when your in a chair? furthermore, after being with that one person since day one, how can you even think about putting a new person thru everything that you have already gone thru with your ex, and how can you be so sure they can handle it?  even if they tell you that its not a problem, how long into the relationship will it become too much for them?  especially when we, ourselves have our days when it, meaning the ms, gets on our nerves and we just want to give up.
in all honesty, i don’t know if i could ever put someone else thru what i deal with on a daily basis.  definitely something to think about.

how true is the saying, if u don’t use it u will lose it. from an ms prospective i believe this saying to be false. why you ask well let me tell you a few short stories.

back in ‘87 i was dx’d. i did everything i could to keep myself out of a chair, after all i had 3 young sons at the time. i walked with them i did all the driving that they needed and even worked pt jobs. this lasted until ‘99 when by now my boys are teenagers and i’m finding it harder to move. but i keep pushing myself. i start using a cane and within a year i go to the walker. i gave up driving due to lose of strength to push brakes. its now 2001 and i’m now using an electric scooter to get around. but when in the house i use my walker. yet going from the couch to the bathroom wore me out. i actually had to take a lot of naps. i asked my doctor why i’m like this when i do everything i can to keep me walking, hell i even joined a gym for 3 years, his answer was u have ms and its progressing. in other words no matter what i do theres nothing i can do to stop it. so its now ‘08 and i use a wheelcair all the time, but, that doesn’t stop me from functioning as a “normal” person. i still go out daily, i volunteer a few days a week and even go food shopping by myself. the reason for this entry is i had a fight with my dad about my sister who also has ms. u see she also is doing everything she can to fight this but, like alot of us she can no longer drive and she needs to conserve her energy. so she ordered a scooter but it wont be here for roughly 3 weeks. well i offered her my scooter until hers comes in, she said yes so thats cool. well i mentioned it to my parents and my dad started yelling at me about how she doesn’t need it she has to keep walking cuz if she doesn’t she’ll lose all her muscles. so i argued she needs to conserve her enery he told me hes with her daily and he knows better for her. i argued that i see her thru ms eyes, and i’m trying to help her not hurt her. well he basically told me i didn’t know what i was talking about. so why is it everyone knows whats good for us but us?

is it giving up when u really believe there is nothing u can do about certain aspects of your life?  when no amount of  exercise or therapy will help and u know that no amount of drugs will help either.  is it wrong to cry because your kids see how this disease is reeking havoc on your body, and u have tried to keep it from them but its not always the easiest thing to do.  there are so many days i just want to give up but because i have kids and grandkids i keep on going.  the problem is there are those days and when they come i don’t always know how to move on.

Who are the people with Multiple Sclerosis?
by Virginia Sanchez

We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little ‘funny’ at the grocery store. We are the people that you “tsk, tsk” over because we might look “too good” to use a handicapped parking space. We are the folks who may not be able to get out to the Church or Temple every weekend; we are your peers; we are human beings.

We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.

Of course, we “look so good” while we’re doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.

Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. “HOW ARE YOU D-O-I-N-G????” they’ll scream, speaking to us as though we were either hearing or intellectually impaired. “YOU LOOK SO G-O-O-D!!!!”

Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; “..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S…”

We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Everyperson. We are the People with Multiple Sclerosis. We are People, Just Like You….

why is it that all you hear from doctors is you have MS. after everything i just went thru (x rays, blood work, bone density test and ultrasound on my legs) it turns out my source of pain is being caused by mild arthritis and shockers of all shockers apparently i have MS! who ever would have guessed. I have gotten to the point in my life that i’m sick of hearing that phrase! believe me i do understand the reality of the situation is yes i do have it but i’m just tired of hearing it.

ya know its getting to the point that i’m becoming numb.  as in so tired of everything being put under the ms that i feel like i’m fighting a battle that i can’t win!  i need some positive re-enforcements,  i need to get out of this chair!  i need someone to have the guts to give me a good, swift kick in the ass!  i need to turn the clock back about 20 years and start over.  don’t know what i would do different but i’m sure i would think of something.

ok, so what do u do when u feel totally helpless?  how do u help someone who u love with all your heart and u know they are in so much emotional pain, yet all you can do is listen while they pour their heart out and as u sit and listen u r crying on the inside for them but on the outside u r being as brave as u can be and during all of this u just want to reach out and hold them while reassuring them, however, u can’t because this whole conversation is occuring either on the phone or over the internet thru iming.  i know the best thing to do is exactly what i did do and thats being there no matter how far away u may be but being a mom its just not that easy!

u know what pisses me off the most is how assholeish people can be. for instance due to circumstances beyond my control i am extremely limited as to what i can and can’t do. my legs don’t work and on days like today where its very cold out my arms decide to go on vacation. so trying to do anything, including writing this, is hard and pretty much impossible. but do u think anyone would offer to help even a little i think not its like pulling teeth but yet they all want their shit when they want it and the hell with me!! i try not to ask for help but if u c the dishes piling up its a no brainer i need help bad day hello!!!!!!!

so went to doctors today and left there extremely frustrated! ok i know i have ms and now i have fibromyalgia, but, come on enough is enough! i guess i have come to the end of the road. NOT!!!!! i’m not quite ready to give up so the fight continues. i don’t know how much fight i have left but what i do know is i’m not about to just lay down and give in. as the saying goes “life is too short to sweat the small stuff” as far as i’m concerned this is just another rock in my way that i need to move in order to continue. and believe me i will be moving that rock and continuing down the road of life with a smile on my face and determination in my step, so to speak.

well its jan 1, 2008. thank good 2007 is over. it definitely was a lousy year. the only good thing that happened was my grandson was born other than that can’t really think of anything good. u see my mom had a quintuple bypass in jan, touch and go for a while. husband lost his job in aug. and still out of work, youngest son joined the marines in nov, and my middle son just moved to texas, with my new grandson, over this past weekend. so being a mom of three boys and having 2 of them leave its been quite depressing. the only thing i am grateful for is my oldest still lives here and his 2 kids. if i didn’t have my 2 grandkids here i would go nuts. oh well tomorrow is another day and with any luck it will be a good one.